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Thread: CN Central: SEPTEMBER UPDATES!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up CN Central: SEPTEMBER UPDATES!


    ((((((Hugs to All)))))) ~

    Here we are in September. Summer is over. Back to school. Labor Day. Football season. A new TV season.

    TIME: The older I get, the faster it flies.

    Jon's nurse visited yesterday to change his catheter. She had an infusion patient after him, so we wanted to be ready to go when she arrived. Jon was sleeping soundly, after finally nodding off at 3:45 a.m. But at 11:00 a.m., I had to disturb him to flush his catheter and deflate the balloon.

    Typically, his nurse does this, but then we have to wait for the cath to slide out on its own, and that can take time. I think we'll do this from now on, so that she doesn't have to waste time waiting. She takes his vitals, but we still wait for the cath to excrete itself. No pulling or tugging on it, as that can cause bleeding.

    All went smoothly, and Jon was smiling and thanking his nurse, which made her feel accepted by him at last. Last night, Jon talked to me about her, saying her name and "Nurse," as well as the name of his former nurse. He was letting me know that he's okay with the transition now.

    We are so blessed that his new nurse is sweet and accommodating of our schedule. She is young (early 30s), so we pray that she stays with the service and will be Jon's nurse for the rest of his life. I know that I'm dreaming. But, I'm allowed now and then to do that, eh?

    Unfortunately, Jon had one of his "off days" yesterday, where his SATS dropped, heart rate elevated, and his temp rose to 101, as his urine output slowed down, and fluid flooded his belly. The unconquerable lymphedema takes over once again. Thankfully, his vitals improved during the night, and today, he is fine.

    Who knows what tomorrow will bring? We just hope and pray for the best.

    This is the place for updates, so I hope you will drop by and let us know what's been happening in your world.

    Meanwhile, you will find me here



    Where there is a comfy chaise, with your name on it

    And your smoothies are waiting



    CELEBRATE THE WORK YOU DO!

    HAPPY LABOR DAY!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Hi Rose, sorry I didn't reply to the last thread. I'm trying to do creative stuff before class starts, leave it to me to start 2 at once haha. I don't think I can say what they are yet. Class for me is a bit irregular in Fall but will start soon. Hoping it goes more smoothly than last Fall. I think you know what I mean…
    Glad Jon likes his new nurse! Thanks for explaining the 02 stuff in the other thread. Fascinating. The trache mask looks cool.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Cool

    ((((((funnylegs4)))))) ~

    "The trache mask looks cool."

    Well, I guess, as medical equipment goes, and as oxygen equipment goes, the trache mask does look cool. It's cool, in that it helps Jon, and it works to bring oxygen to his lungs. It's cool, in that, if you have a trache, it's better than having a canula poking in your nostrils and a tight strap irritating the outside of your ears.

    I've never thought of it as being cool, so you've given me a new perspective.

    I look forward to finding out more about your creative projects. I hope that all goes well for you in your classes this year. Just remember that everything, which happens in life, has meaning and is a learning experience. Keep your eyes, ears, mind, heart, and spirit open!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    "The trache mask looks cool."

    Well, I guess, as medical equipment goes, and as oxygen equipment goes, the trache mask does look cool. It's cool, in that it helps Jon, and it works to bring oxygen to his lungs. It's cool, in that, if you have a trache, it's better than having a canula poking in your nostrils and a tight strap irritating the outside of your ears.

    I've never thought of it as being cool, so you've given me a new perspective.

    I look forward to finding out more about your creative projects. I hope that all goes well for you in your classes this year. Just remember that everything, which happens in life, has meaning and is a learning experience. Keep your eyes, ears, mind, heart, and spirit open!

    Love & Light,

    Rose
    Thanks Rose! I'll be releasing more info on the projects as soon as I can. The bigger parts and announcements will come in 2017 most likely and will be posted in the threads as well as on the blog feature here. I think the trache mask is cool because it has made Jon's life and the lives of others better, and I think the design is pretty clever in itself. I'v always been fascinated by medical stuff. I know that might seem weird but its just one of my quirks. I hope you understand. You are completely right! I can learn from all that is around me and be a better writer and person because of it. I love how you worded that!

    Happy Labor Day!
    Last edited by funnylegs4; 09-04-2016 at 09:12 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((funnylegs4)))))) ~

    I completely understand your interest in medical devices and technology. You've been around it all of your life, and I have for my entire adult life. It is pretty fascinating. And this is something else for you to tuck away in your memory bank for future reference, if someday you write about a person, who needs O2 or has a trache.

    Everything in Life is a story. I've always viewed Life this way, from the smallest, seemingly most insignificant things to global issues. Every person has a story, a unique story, which shares similarities to the stories of others.

    I learned to listen to people. And as they told me their stories, I visualized it, and I wrote it in my mind. As a result, people, complete strangers, tend to open up to me.

    To me, the essence of writing is keen observation. Seeing the grey areas, not just black and white. The nuances, the subtleties of Life. Noticing and absorbing everything around you. Using all of your senses at once.

    Write every day. That's the best way to hone your skills. Let the words pour out of you. Then, let it rest, return later and edit. Or leave it as it is.

    Everything you write won't be a masterpiece. The point is expressing yourself, finding your voice, your style, your passion with words and images.

    Just keep writing.

    End of Lecture ~ Creative Writing 101



    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    I completely understand your interest in medical devices and technology. You've been around it all of your life, and I have for my entire adult life. It is pretty fascinating. And this is something else for you to tuck away in your memory bank for future reference, if someday you write about a person, who needs O2 or has a trache.

    Everything in Life is a story. I've always viewed Life this way, from the smallest, seemingly most insignificant things to global issues. Every person has a story, a unique story, which shares similarities to the stories of others.

    I learned to listen to people. And as they told me their stories, I visualized it, and I wrote it in my mind. As a result, people, complete strangers, tend to open up to me.

    To me, the essence of writing is keen observation. Seeing the grey areas, not just black and white. The nuances, the subtleties of Life. Noticing and absorbing everything around you. Using all of your senses at once.

    Write every day. That's the best way to hone your skills. Let the words pour out of you. Then, let it rest, return later and edit. Or leave it as it is.

    Everything you write won't be a masterpiece. The point is expressing yourself, finding your voice, your style, your passion with words and images.

    Just keep writing.

    End of Lecture ~ Creative Writing 101



    Love & Light,

    Rose
    Thank you so much Rose! Wonderful advice Professor Rose! ;) I will do as you suggest. I met someone whose boyfriend used a trache actually. They follow my blog. I will save those bits of info along with everything else in my notes. I tend to write a lot of notes and these become the basis of the scenes and dialogue for my scripts, I now listen to everything around me and now I know to assume nothing and instead to treat everything and everybody individually because nothing is simple, especially these days. Like you I now have people coming to me telling me their stories, even allowing me to interview them about their lives and various medical issues like diabetes(never thought I’d learn so much about blood sugar!),epilepsy,TBI, polio,Cohn’s disease,lime disease,blindness,stroke,and learning disabilities etc. These have been some of the most wonderful and precious experiences of my life so far(see my "where I hope films will go" post on the blog feature here for more) to have others communicate with me this way. I write at least 2 sentences or more each day.
    YOU should be writing my friend! Write your story,Michael’s story,Jon’s story! Write it all! Our stories are powerful and affirm life! I always felt you should write a book.
    Last edited by funnylegs4; 09-06-2016 at 05:54 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Thumbs up

    ((((((funnylegs4)))))) ~

    Sounds like you're doing all of the right things to grow and expand as a writer and film maker. That's great!

    I studied journalism in high school and college, worked on school newspapers and was the Editor for one year in college. All of this during the turbulent 1960s, a heck of time to cut my teeth on reporting. When I graduated, I was trained in film, theater, communication, and creative writing. I taught high school and then adults in the first off campus degree program in the U.S.

    I have started two books, one about my sons, and one a compilation of columns I wrote for a parental grieving site. I've often thought that if I could assemble all of my posts during the last 16 years on CN, I would have several books! Or one major epic!

    I figure that I've reached a fairly large audience on the internet through my participation on assorted medical and grief related forums. Pre-internet, my advocacy op eds and Letters to the Editor were published in major newspapers.

    So, if I never finish and publish my books, I know that I've served my purpose as a writer on Earth. With that, I am content and at peace.

    Keep writing and following your dream ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    Sounds like you're doing all of the right things to grow and expand as a writer and film maker. That's great!

    I studied journalism in high school and college, worked on school newspapers and was the Editor for one year in college. All of this during the turbulent 1960s, a heck of time to cut my teeth on reporting. When I graduated, I was trained in film, theater, communication, and creative writing. I taught high school and then adults in the first off campus degree program in the U.S.

    I have started two books, one about my sons, and one a compilation of columns I wrote for a parental grieving site. I've often thought that if I could assemble all of my posts during the last 16 years on CN, I would have several books! Or one major epic!

    I figure that I've reached a fairly large audience on the internet through my participation on assorted medical and grief related forums. Pre-internet, my advocacy op eds and Letters to the Editor were published in major newspapers.

    So, if I never finish and publish my books, I know that I've served my purpose as a writer on Earth. With that, I am content and at peace.

    Keep writing and following your dream ~

    Love & Light,

    Rose
    Ah yes the 1960s! I didn't know you taught! College level classes?? That's awesome! Very impressive resume Rose! Will do. Yes you have certainly reached countless people.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Here's something of an update you ladies might find kinda interesting. I learned basic CPR today. I really hope I NEVER have to use this skill, ever! I was shown how to put a person in recovery position. I think I remember you mentioning recovery position to me at one point Rose.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((funnylegs4)))))) ~

    That's great that you've learned CPR! Congratulations! I hope you never have to use it, but it is certainly valuable knowledge to have, in case it is ever needed.

    Yes, I mentioned the recovery position with respect to seizures ~ very important to prevent aspiration.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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