Attention many new readers, in case you haven't read the disclaimers, the below post contains bad language in the original spirit of the original CysticGal blog: )
Also, want to read some funny current thoughts by CG and often to CysticLady (my sister), read the tweets to the right!
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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.
Love, CG
Friday, October 30, 2009
Thursday, October 29, 2009
Quickie post
I don't have the energy to post all the update but just wanted to say hello. Things are progressing every day. A little better and a little closer to transplant. Still in the hospital. Don't know if I want to go home or not. Don't know if they want me to go home or not. A little sick of hearing every one say, "Obviously we don't expect you to make much improvement, but [insert thing they want me to accomplish anyway, even though they just told me I won't be able to do it.]"
But f that, I say. I walked for 10 minutes today and did not have a deep de-sat until I stopped walking. Down to 8L exercising, 4.5L resting.
Did my will and my power of attorney and all sorts of my "bidness" with my parents over the past few days.
Preparing for surgery. Making a music list to push on the surgeon because word on the street is, "He's into that."
Still enjoying Florence Nightingale Syndrome, hoping to further develop it for Tx team.
Still enjoying time in the cocoon I have made for myself that I am realizing is my family and my friends that are as close as family. Glad I made this cocoon and that it gets smaller and simpler everyday.
Now, to sleep. With Bipap.
Love, CG
But f that, I say. I walked for 10 minutes today and did not have a deep de-sat until I stopped walking. Down to 8L exercising, 4.5L resting.
Did my will and my power of attorney and all sorts of my "bidness" with my parents over the past few days.
Preparing for surgery. Making a music list to push on the surgeon because word on the street is, "He's into that."
Still enjoying Florence Nightingale Syndrome, hoping to further develop it for Tx team.
Still enjoying time in the cocoon I have made for myself that I am realizing is my family and my friends that are as close as family. Glad I made this cocoon and that it gets smaller and simpler everyday.
Now, to sleep. With Bipap.
Love, CG
Monday, October 26, 2009
Guest Blog by CysticLady: Update on CysticGal III
I just got off the phone with CysticGal. She wanted me to post an update. I will also try to explain what happened last week that led up to her stay in ICU. We were all very worried, especially her, and at the time I wasn't sure what I should and shouldn't write based on my speculations of what was happening from nearly 1,000 miles away.
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.
Teeda (CysticLady)
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.
Teeda (CysticLady)
Sunday, October 25, 2009
I Did Not Notice the Passers-by, And They Did Not Notice Me.
Dear CG Readers,
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
U2
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.
CG
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
U2
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.
CG
Saturday, October 24, 2009
The 2nd Most Important NEWSFLASH!
First, release your worries, CGers! I am out of ICU as of last night. I have a long, or short, road a-ho, but I am out of ICU and glad to me after much initial trepidation.
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.
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
Guest Blog by CysticLady: Update on CysticGal II
Tonight I got calls from CysticDad and CysticMommy saying that they are moving CysticGal to the ICU. She's just not breathing very well. She had some Solu-Medrol® at 6:00 PM. I hope that helps her a lot, it helped me a lot when I was in the same situation. Hopefully she will do better with the kind of one-on-one care that you receive in the unit.
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.
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
It's Me
Yo world, It's CG here, it's really me!
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: . . .
Johnny Cash
Elvis
Dracula
Vampires in general?
Count Chocula
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
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: . . .
DUDE!
My totally on-the-verge-of-being-witty-n-hilarious blog just got interrupted by the Respiratory Therapist hooking up my BiPap who decided to entertain me with ALL, I repeat, ALL of the following voices:
Johnny Cash
Elvis
Dracula
Vampires in general?
Count Chocula
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
Guest Blog by CysticLady: Update on CysticGal
CysticGal went into the hospital on Monday. Yesterday's ABG showed very high pCO2, or carbon dioxide level. They made arrangements for her to be on BiPAP at least when sleeping.
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!
Teeda (CysticLady)
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!
Teeda (CysticLady)
Tuesday, October 13, 2009
Guest Blog by CysticLady: CF and Relationships Part II
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.
Teeda (CysticLady)
Monday, October 12, 2009
Guest Blog by CysticLady: CF and Relationships
I knew this day would come where I would post here, and I've had this idea percolating; however, I don't think that now, or any time in the near future will I know how to handle relationships and CF.
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.
Teeda (CysticLady)
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.
Teeda (CysticLady)
Back In the Saddle Again
Back in the hospital again I offer you the best sort of post that there is to post which is of course the post of stream
of
consciousness
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
or drowning
or both
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,
a nap.
i miss my cats.
goodnight.
look forward to the first post by CLady, perhaps tonight!!
Sunday, October 11, 2009
Statcounter! Good Work CG Community!
5,448 Unique Visitors EVER, and 419 Readers this week! YAY! Awesome!! There have been some really great STATs lately but I haven't had time to post 'em. Below is the recent weekly total, and I will copy the search words just below it, to see how many Florence Nightingale searchers I am still confusing . . . (drum roll please, as I toggle over to see . . . )
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!
Enjoy!
CG
<<
<
Weekly Stats Report: Oct 5 - Oct 11 2009
Project: Cystic Gal
URL: http://cysticgal.blogspot.com/
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!
Enjoy!
CG
<<
| 25.00% | florence nightingale syndrome | ||
 | 6 | 25.00% | cystic gal |
| 3 | 12.50% | cysticgal.blogspot.com |
| 2 | 8.33% | CLOWNS CYSTIC FIBROSIS |
|
|
| Page Loads | Unique Visitors | First Time Visitors | Returning Visitors | ||
| Total | 11,313 | 5,448 | 2,975 | 2,473 | |
| Average | 11,313 | 5,448 | 2,975 | 2,473 | |
| Year | Page Loads | Unique Visitors | First Time Visitors | Returning Visitors | |
| 2009 | 11,313 | 5,448 | 2,975 | 2,473 | |
Weekly Stats Report: Oct 5 - Oct 11 2009
Project: Cystic Gal
URL: http://cysticgal.blogspot.com/
| Mon | Tues | Wed | Thur | Fri | Sat | Sun | Total | Avg | |
| Pageloads | 180 | 170 | 199 | 123 | 100 | 121 | 67 | 960 | 137 |
| Unique Visitors | 68 | 67 | 75 | 44 | 57 | 55 | 53 | 419 | 60 |
| First Time Visitors | 38 | 34 | 40 | 19 | 29 | 23 | 32 | 215 | 31 |
| Returning Visitors | 30 | 33 | 35 | 25 | 28 | 32 | 21 | 204 | 29
|
Saturday, October 10, 2009
The Placebo Effect or Mr. Miyagi: Good Enough for Me
Tonight I had some wonderful Reiki from a wonderful nurse I know and adore. I am also now sleepy and relaxed and rested. And so is my kittttty.
I will write about this better tomorrow, this crystal wearing hippy is sleepy.
Peace in, fear out.
Wax on, wax off.
Daniel-san, Cystic-gal.
:)
Goodnight, CG
I will write about this better tomorrow, this crystal wearing hippy is sleepy.
Peace in, fear out.
Wax on, wax off.
Daniel-san, Cystic-gal.
:)
Goodnight, CG
Friday, October 9, 2009
In Defense of Alone Time
So right now I'm gettin so busy during day with the exercisin and the medicatin and the nappin and the eatin and the paper workin and the plannin and the bill payin and the phone callin and the emailin and the cats . . .
that I am not the bloggy that I used to be.
But I do have some good blog post titles building up in my and so here one is right here:
In Defense of Alone Time .
I am alone and awakey-wakey-no-mistakey . . . probably right now . . . about 10 hours of the 24 in a day.
Thus, an equation:
24 hours in a day
-9 hours sleepin at nighto
-3 hours at a doc appointment (travel incl)
-2 hours of visitor palsy walsies
---
10 hours of Cystic Gal Activity
Of this I spend time doing all that stuff up there, described as:
"the exercisin and the medicatin and the nappin and the eatin and the paper workin and the plannin and the bill payin and the phone callin and the emailin and the cats . . ."
Thus, a second, funnier equation:
10 hours awakey in a day
-1.5 hours exercising (cardio, yoga)
-2 hours medicatin (nebs, airway clearance, etc)
-2 hours nappin (if I'm good and get up)
-1.5 hours eatin (3-5 meals, yum)
-1 various tx related "get your papers in order" business
-1 neurotic worries over life/death
-1 phone calls I accept begrudgingly
-1 emailin' I accept lovingly
-all remaining time for cats.
---------------------------------
As you can see, cats aside, I have -1 hour to spend with myself.
No wonder I miss me so very very much.
Also, I offer you THIS ARTICLE in defense of my alone time and yours. The people here aren't even facing particular troubles and they get their alone time. Yay them!!
Don't you miss you?
that I am not the bloggy that I used to be.
But I do have some good blog post titles building up in my and so here one is right here:
In Defense of Alone Time .
I am alone and awakey-wakey-no-mistakey . . . probably right now . . . about 10 hours of the 24 in a day.
Thus, an equation:
24 hours in a day
-9 hours sleepin at nighto
-3 hours at a doc appointment (travel incl)
-2 hours of visitor palsy walsies
---
10 hours of Cystic Gal Activity
Of this I spend time doing all that stuff up there, described as:
"the exercisin and the medicatin and the nappin and the eatin and the paper workin and the plannin and the bill payin and the phone callin and the emailin and the cats . . ."
Thus, a second, funnier equation:
10 hours awakey in a day
-1.5 hours exercising (cardio, yoga)
-2 hours medicatin (nebs, airway clearance, etc)
-2 hours nappin (if I'm good and get up)
-1.5 hours eatin (3-5 meals, yum)
-1 various tx related "get your papers in order" business
-1 neurotic worries over life/death
-1 phone calls I accept begrudgingly
-1 emailin' I accept lovingly
-all remaining time for cats.
---------------------------------
As you can see, cats aside, I have -1 hour to spend with myself.
No wonder I miss me so very very much.
Also, I offer you THIS ARTICLE in defense of my alone time and yours. The people here aren't even facing particular troubles and they get their alone time. Yay them!!
Don't you miss you?
Thursday, October 8, 2009
Namaste: just the news
I am so very tired tonight so I will not write a long post. But I wanted to share some news. It looks like most of my transplant eval will be done 10/21. Woah holy poo that's soon.
I did some wicked good yoga and though I don't have the energy to write a long ass post about how good it is for me, I wanted to tell you that I have been doing yoga since the age of 16, and though I cannot say that I did it every single day since then, I can say that I practice yoga movements and breathing techniques in my artistic theatre work, and it's safe to say that yoga has definitely been part of me staying well for the past 5-6 years with severe lung disease. Tonight, I was able to turn my oxygen down 1.5 liters from where it was prior to my yoga session.
Also- it's good for the mind.
I have this idea to write a book called "Get Welliquette."
I also want to write two other books.
I also want to go to bed. Love, CG
I did some wicked good yoga and though I don't have the energy to write a long ass post about how good it is for me, I wanted to tell you that I have been doing yoga since the age of 16, and though I cannot say that I did it every single day since then, I can say that I practice yoga movements and breathing techniques in my artistic theatre work, and it's safe to say that yoga has definitely been part of me staying well for the past 5-6 years with severe lung disease. Tonight, I was able to turn my oxygen down 1.5 liters from where it was prior to my yoga session.
Also- it's good for the mind.
I have this idea to write a book called "Get Welliquette."
I also want to write two other books.
I also want to go to bed. Love, CG
Wednesday, October 7, 2009
To Pique Your Interest, Cystic Lady Quoted Below
I decided to share with you one of my sister's blog posts about "Project Cruise Hotness," so that you can be prepared for her also-quirky writings. This is the final posting in a long series of writings that we both did related to Hotness, and the pursuit thereof, for our international travels:
Wednesday, April 1, 2009
What We Learned On Our Cruise Part II
1) I do look like trouble, and Beth looks like an angel. Also, little old ladies can be mean to me, and they don't like my cowboy hat. Men do like my cowboy hat. I think the little old ladies are jealous.
2) Only Beth gets compliments like "Princess", "Lovely Lady", etc. Then they say something to her like, "oh looks like you brought trouble back for dinner" (referring to me). I have not yet decided what to make of this, but I can tell you it has been going on our whole lives.
3) I already had a theory that two breakfasts were needed to sustain my troublesome activities. The cruise proved that theory. We need a warm-up breakfast, second breakfast, and to be planning the next day's two breakfasts at all times.
4) The only thing that Beth does in her sleep is kick people. She's always done that. I am able to lots of things, as I have way more practice being productive while also sleeping. Warning: If you plan to get heat stoke and you think my sleep walking butt will save you, you are wrong. I will probably just growl at you like a mean bear.
5) Asian women who give massages on cruises are appalled at the lack of water in my diet. They do not feel that a diet of breakfast and Mountain Dew is adequate.
6) I still regret teaching Beth about roulette. She spanked me the second night and I had no money left. I think I should have taken her to the Unicorn game.
7) When your little sister looks really cute and wants to play the Unicorn slot machine even though it's total bogus, do not do it. I think it was really just a ploy to eat up the 300% winnings I had after my first night at roulette.
8) Seeing cruise commercials about the Yellow Bird boat inspires you to make videos about how you've never drank so much rum punch in your whole life. The video also makes you think lots of drunk baby boomers are riding the Yellow Bird boat and dancing like Elaine Benes. That has some potential. Then, while waiting for your wonderful beach getaway, you see that the real Yellow Bird occupants are really drunk men with hairy bellies with balloon animals shaped like penises on their heads. I think the Yellow Bird boat is a bad idea, personally.
9) A rum cake is indeed covered completely and soaked in rum. It is also air packaged so tight that you might injure yourself while attempting to open the package. Let this be a warning to you.
10) It was very tempting to see how long Beth and I could live on the Nassau beach. But, we felt bad for the sting rays and I think we would have freed them. Sting Rays don't want people touching them!
11) Spring Breakers and Cougars by the pool are not a good combination. We definitely saw a lot of butts, or maybe we just saw a couple and that was enough.
12) Sometimes there will be a belly flop competition. It is run by the cruise director and a gay guy. I'm still not sure how the winner of the belly flop competition fits into his room, or his bathroom. He must have had a bigger room than we did.
13) Cougars on cruises with lots of bling are very strange indeed. They seemed to be seeking eligible males. If there had been any eligible males, Beth and I would have snatched them up. Bling or no.
14) I wish the cruise would have been a couple nights longer so we could properly investigate the two families we thought were polygamists. Who wants to wear those Little House on the Prairie dresses on a cruise ship?
15) When borrowing a suitcase from your parents for your cruise, search all of the pockets carefully, so that upon re-entry to the country you are not accused of trying to smuggle in coffee.
16) We noticed that a number of younger couples frequently looked kinda miserable on their cruise. The older couples looked very happy. This is because by the time you are an old couple, you know better than to attempt to make your wife sit indoors at a cruise ship bar and watch basketball, for instance.
The biggest lesson, always take a cruise with your sister. Take one every year. It's the best!
Tuesday, October 6, 2009
More on Dragons
I am up late and it's a whole new post date now. A few weeks ago Mary from "Peter, Paul and Mary" died. This leaves me thinking about dragons again and how I was on this whole mission to figure out why CFers are not dragon slayers, but dragons themselves. If this seems out of context, new readers, this was a topic earlier in the CG blog world.Perhaps I will get another dragon poem out of it.
Dragons are noble and courageous and brave.
Dragons have a mighty roar and a fierce fire inside
Dragons are strong strong stronger than the will of any mortal man
"Dragons live forever, and not so little boys."
Dragons feel deeply, live boldly, and live their very public adventures in a very isolated way. There are not big packs of dragons. Yet every time a dragon flies through the sky, there it is, a dragon. A dragon to look at and admire but only one or two befriend.
Tonight I am thinking a lot about how to begin to summon my inner dragon with more ferociousness. I will need to be more noble and courageous than I am right now.
I will need to have a fiercer fire.
I will need to be stronger than mortality.
I could live forever. Maybe.
Love, CG
More poetry posts this week. 2 are percolating.
Monday, October 5, 2009
Introducing Guest Blogger Cystic Lady!
"PS - i adore the 20 second videos of you
and [Cystic Lady]
i've never met the girl, but i can tell she rules."
-Actual comment on facebook today.
and [Cystic Lady]
i've never met the girl, but i can tell she rules."
-Actual comment on facebook today.
Cystic Lady, March 2009, in pursuit of Cruise Hotness.I have added a guest blogger who you already e-know and e-love, Cystic Lady! Cystic Lady hails from the original Cystic Family of Cystic Gal, Cystic Mommy, Cystic Dad of recent CG commentary and Cystic Sibling who goes mostly anonymous on blog thus far. (He is mysteriousemente, that Cystic Sibling I love!). [If you struggled to pronounce mysteriousemente, try it again in a Spanish accent).
Cystic Lady and Cystic Gal teamed up earlier this year to write the much-acclaimed and forwarded Facebook Notes, "Project Cruise Hotness," of which we have not yet written the final chapter. Perhaps we will publish "Project Post Transplant Hotness" in 2010. Oh to be a Cystic^ Sister!
Cystic Lady is in her thirties, w/CF, CFRD, and approximately 6 years post-transplant. The rest of her story is up to her to tell. She has gotten her most recent bloggy start HERE, but she has agreed to contribute directly to CG for awhile, while I'm undergoing my shiizzzle. Don't worry, I'll still be contributing, like, all the time.
Let's give a big CG welcome to . . .
Cystic Lady!
Cystic Lady!
Sunday, October 4, 2009
Looking for "poems about boobs."
This Week's
Hilarious Statcounter Update!
Hilarious Statcounter Update!
The top search term used to locate CG this week - ON TWO DIFFERENT DAYS: "poems about boobs."
See evidence below. Also, apparently I am still confusing googlers worldwide who are seeking information on Florence Nightingale. Tee hee.
| Date | Time | Name | Query | Landing Page | |
 | Oct 6 | 05:16:31 PM | www.google.com | poems about boobs | 2009/08/poem-from-hospital.html |
| Oct 6 | 09:42:16 AM | www.google.be | "my underwear drawer" | 2009/09/my-underwear-drawer-fair-representation.html |
| Oct 6 | 09:16:21 AM | www.google.com | cystic gal blogspot | http://cysticgal.blogspot.com/ |
| Oct 6 | 09:11:18 AM | www.google.com | cystic gal blogspot | http://cysticgal.blogspot.com/ |
| Oct 6 | 09:09:06 AM | www.google.com | cysticgal | http://cysticgal.blogspot.com/ |
| Oct 5 | 11:10:43 PM | www.google.ca | florence nightingale syndrome | 2009/07/florence-nightingale-syndrome-what-can.html |
| Oct 5 | 09:59:21 PM | www.google.com | A good day, aint got no rain. A bad day is when I sit in bed and think of things that might have bee | 2009/07/good-day-aint-got-no-rain.html |
| Oct 5 | 09:50:43 PM | www.google.com | cystic gal | http://cysticgal.blogspot.com/ |
| Oct 4 | 09:07:14 PM | www.google.com | poems about boobs | 2009/08/poem-from-hospital.html |
| Oct 4 | 01:28:00 AM | www.google.com | current health updates | 2009/09/current-situtaion-heres-sitch.html |
Saturday, October 3, 2009
Friday, October 2, 2009
It's a-Happenin'!
Today was my initial transplant evaluation meeting and we got the ball rollin'! CysticLady was here for me, and we talked all about my big careteam of CysticMommy, T-Money, and others!
We are exhausted and must go to bed.
My cats are awesome.
Love, CG
We are exhausted and must go to bed.
My cats are awesome.
Love, CG
Thursday, October 1, 2009
Metaphor du Jour.
Living with CF is like trying to ride your bike home before a thunderstorm.
The rest of the metaphor's explanation is cheesy.
So I'm gonna leave it at that.
I have a big doc appt tomorrow and CysticLady is coming to visit too, and I still have to do my 2nd Tobi and then go nn.
So, g'night.
Read Ronnie's blog tonight and answer a CF Gramma question. (You can find his blog on my right hand column, "RunSickBoyRun."
gn,
CG
The rest of the metaphor's explanation is cheesy.
So I'm gonna leave it at that.
I have a big doc appt tomorrow and CysticLady is coming to visit too, and I still have to do my 2nd Tobi and then go nn.
So, g'night.
Read Ronnie's blog tonight and answer a CF Gramma question. (You can find his blog on my right hand column, "RunSickBoyRun."
gn,
CG
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