Another update and a plea
Some days are better than others, and today is not one of those. Perhaps it is because of yesterday's migraine and a hangover from that, or a slight malaise from a cold that I keep fending off. I'm not sure what is the problem. But I feel rather down tonight and was crying some, earlier, thinking about what is happening to Joe.
He went to the GP this afternoon, and was given the name of a local pulmonologist, which he told me outright he would need "at the end." He didn't mention a vent this time, or nursing homes and 24 hour care, just "at the end" as if he had given up the notion of going that other route. I didn't dare ask him what he meant, though I'm ashamed of my cowardice.
He obviously is having trouble. He still has a nasty cough from the cold he just had and is recovering from, and it is clear he can't cough up what he needs to in order to clear his throat. His voice is thick and phlegmy, as if he is talking underwater, but he can't do anything about it. The GP said his lungs were clear, however, so that is a good sign. On the other hand, no one would tell him his pulmonary function scores this afternoon, though he had every right to know what they were. He has woken up with a headache at least once, a good sign that his oxygen level is low at night.
I do not want this to happen. I do not want this to happen. I am so afraid that he will be afraid of dying when the time comes, and that would tear me to pieces. On the other hand, if anyone could see it as embarking on a new adventure, Joe is one who just might. So we'll see what happens.
I have been successfully drinking my 500 calorie shakes and once I even ate 1000 calories in a day instead of boosting my intake with the liquid supplement. Today I haven't done as well, yet, but there is still time. Yesterday, well, I can be forgiven for not meeting the goal then, because of my migraine, but every other day last week I did the best I could and gradually did reach the target of 1000 calories a day. So now I need to maintain that and see what happens. Then I can see if I can start doing more, maybe start walking a bit and getting out a little, rather than sitting all day doing nothing, to conserve my energy.
Okay, guys, help me out here. I don't like babbling on and on about what my days are like. PULEEZE, give me some ideas of what to write about, wontcha??? I'm sick of hearing myself ramble on and on about nothing! Thanks, BD
Posted by pamwagg at September 25, 2006 08:22 PM
Hi Yaya,
Yes, I have the same problem managing my time and I also like doing a bunch of different things. One thing that worked for a while was getting a Dry Erase board, writing a list of activities and checking them off as I went along through the day (and night). This way I could see how much I was accomplishing each day and know that I was making progress. I could also see what I was neglecting and redirect my energy. Unfortunately, I stopped doing that and got distracted, so sometimes you just have to pick up where you left off. If I were really motivated I might make a daily schedule to follow...oh well, I'll keep trying. You too.
I'm glad you liked the poems and that they made you think of your past lover. Change really is "always with us" for better and worse.
Life is change though I know I sometimes resist it, I'm also grateful that I can still hope for positive changes to replace negative ones.
Be well,
Kate :)
Posted by: Kate K. at September 26, 2006 05:11 PM
Hi Kate,
I like your poems on Joe and change. Change is always with us.
Many years ago I was in love with a man who developed cancer. I remember walking with him through a park. At that point he was very ill. We stopped and sat under a tree. The weather was gorgeos. We talked and snuggled and he told me that he wished that very moment of talking, snuggling and the beautiful weather would remain frozen in time forever. He died two months later, but I will never forget that moment and other times we shared together. He was such a lovely human being. I grieved for him and then moved on with my life.
He reminded me that life keeps changing. We have no idea what is around the corner, it can be a time for sadness or times of joy. He taught me to savor the moment.
Kate, your poems reminded me of my friend Jules.
Posted by: yaya at September 26, 2006 11:21 AM
Hi Pam,
One of the things that cause me great deal of frustration is managing my time. I’m interested in so many things, but how do I find the time to do the things I'm interested in. Do I need to narrow my focus and just work on what gives me the most pleasure (knitting) or do I go hog wild and try to do it all. I’m wondering if anyone else has the same problem.
These are the things I love to do: knitting, gardening, sewing, hanging out with my daughter, learning beading from my youngest daughter, reading, going to the matinee with my husband, attend community theatre productions, puttering around the house, hiking and writing on my website.
In my young years I was a neat freak and my house was always spotless, but now I loathe house cleaning but I do it so I don’t have the health department knocking on my door.
How do others manage their time? I’m having a real hard time with it. Now that I’m not working I wonder how I ever found the time to work full time.
Yaya
Posted by: yaya at September 26, 2006 01:04 AM
Dear BD,
I worry more about you than about Joe. Joe has probably come more to terms with his eventual death than you have. Pam, you must prepare. You will need a couple of people off-line and the rest of us here online for support. Have you read a book called On Death And Dying by Elisabeth Kubler-Ross? I haven't read it yet but am preparing to, after-all my father turned 80 in August and he has leukemia. He may be here for another 10 years or more but he also might not and I want to work through some of the grieving process ahead of time so that it doesn't take me by suprise and floor me. I think you need to do some of this too. And write about Joe. You know him so well and it could be a book or a collection of poetry dedicated to him and his life. I was thinking about you and Joe today and I wrote two spur of the moment poems. I'm not the greatest poet but I want to show you that I care. Any criticism would be welcome.
JOE
We are losing Joe to the forces of nature,
Awesome, wonderful, horrible nature
That takes a man piece by piece
Till he can no longer stand or speak.
And those who love him
Must mourn each loss.
And those who love him
Must cherish each day.
While the mind will be
A sharp witness of the destruction
Of muscle and limbs
Whatever is left
Is still Joe:
Joe the strong, kind and positive.
Joe the faithful companion.
Joe who will hold on for you
Until he can no longer.
CHANGE
Change is the constant in life
Birth, growth and decay
Nature's countless repetitions,
Survival of the fittest
Only for a time.
Long ago the naked ape
Standing upright, took her first steps
Out of the jungle.
Long ago and yet, across the span of time
Just a few blinks of the eye.
The cataclysmic upheaval
Of mountains being born
To the soft contours of ancient hills.
Water erosion and the wear and tear
Of the changing atmosphere,
All is not what it once was.
We dig down deep into the earth
To find the physical clues of change
The foundations of homes,
The shards of pottery and tools,
The bones of the young and old.
We can hold these remnants
In our hands willing a symbiotic memory
To arise and enlighten us, to answer
All our wandering questions, to clear
All our false steps and erroneous paths,
To make sense out of nonsense.
Kate :)
Posted by: Kate K. at September 26, 2006 01:03 AM
Hi Pam,
I have a question for you about Zyprexa. My daughter is switching from Abilify because she can't stand the akathesia. She has been on Zyprexa for almost three weeks. Last week it was upped from 10 to 20mg. From feeling agitated and restless she is now just totally flat and exhausted. Hardly speaks. In your experience, and I know you said you liked Zyprexa, does the tired-all-the-time-feeling diminish? I know it is different for everyone, but I was wondering what your experience was. She does seem to think she can concentrate a little better - she could not read on Abilify.
She has not gained any weight so far, happily.
Thanks,
Ruth
Posted by: Ruth at September 25, 2006 11:11 PM
Early
Schizophrenia Screening Test
Hi Yaya,
Yes, I have the same problem managing my time and I also like doing a bunch of different things. One thing that worked for a while was getting a Dry Erase board, writing a list of activities and checking them off as I went along through the day (and night). This way I could see how much I was accomplishing each day and know that I was making progress. I could also see what I was neglecting and redirect my energy. Unfortunately, I stopped doing that and got distracted, so sometimes you just have to pick up where you left off. If I were really motivated I might make a daily schedule to follow...oh well, I'll keep trying. You too.
I'm glad you liked the poems and that they made you think of your past lover. Change really is "always with us" for better and worse.
Life is change though I know I sometimes resist it, I'm also grateful that I can still hope for positive changes to replace negative ones.
Be well,
Kate :)
Posted by: Kate K. at September 26, 2006 05:11 PM
Hi Kate,
I like your poems on Joe and change. Change is always with us.
Many years ago I was in love with a man who developed cancer. I remember walking with him through a park. At that point he was very ill. We stopped and sat under a tree. The weather was gorgeos. We talked and snuggled and he told me that he wished that very moment of talking, snuggling and the beautiful weather would remain frozen in time forever. He died two months later, but I will never forget that moment and other times we shared together. He was such a lovely human being. I grieved for him and then moved on with my life.
He reminded me that life keeps changing. We have no idea what is around the corner, it can be a time for sadness or times of joy. He taught me to savor the moment.
Kate, your poems reminded me of my friend Jules.
Posted by: yaya at September 26, 2006 11:21 AM
Hi Pam,
One of the things that cause me great deal of frustration is managing my time. I’m interested in so many things, but how do I find the time to do the things I'm interested in. Do I need to narrow my focus and just work on what gives me the most pleasure (knitting) or do I go hog wild and try to do it all. I’m wondering if anyone else has the same problem.
These are the things I love to do: knitting, gardening, sewing, hanging out with my daughter, learning beading from my youngest daughter, reading, going to the matinee with my husband, attend community theatre productions, puttering around the house, hiking and writing on my website.
In my young years I was a neat freak and my house was always spotless, but now I loathe house cleaning but I do it so I don’t have the health department knocking on my door.
How do others manage their time? I’m having a real hard time with it. Now that I’m not working I wonder how I ever found the time to work full time.
Yaya
Posted by: yaya at September 26, 2006 01:04 AM
Dear BD,
I worry more about you than about Joe. Joe has probably come more to terms with his eventual death than you have. Pam, you must prepare. You will need a couple of people off-line and the rest of us here online for support. Have you read a book called On Death And Dying by Elisabeth Kubler-Ross? I haven't read it yet but am preparing to, after-all my father turned 80 in August and he has leukemia. He may be here for another 10 years or more but he also might not and I want to work through some of the grieving process ahead of time so that it doesn't take me by suprise and floor me. I think you need to do some of this too. And write about Joe. You know him so well and it could be a book or a collection of poetry dedicated to him and his life. I was thinking about you and Joe today and I wrote two spur of the moment poems. I'm not the greatest poet but I want to show you that I care. Any criticism would be welcome.
JOE
We are losing Joe to the forces of nature,
Awesome, wonderful, horrible nature
That takes a man piece by piece
Till he can no longer stand or speak.
And those who love him
Must mourn each loss.
And those who love him
Must cherish each day.
While the mind will be
A sharp witness of the destruction
Of muscle and limbs
Whatever is left
Is still Joe:
Joe the strong, kind and positive.
Joe the faithful companion.
Joe who will hold on for you
Until he can no longer.
CHANGE
Change is the constant in life
Birth, growth and decay
Nature's countless repetitions,
Survival of the fittest
Only for a time.
Long ago the naked ape
Standing upright, took her first steps
Out of the jungle.
Long ago and yet, across the span of time
Just a few blinks of the eye.
The cataclysmic upheaval
Of mountains being born
To the soft contours of ancient hills.
Water erosion and the wear and tear
Of the changing atmosphere,
All is not what it once was.
We dig down deep into the earth
To find the physical clues of change
The foundations of homes,
The shards of pottery and tools,
The bones of the young and old.
We can hold these remnants
In our hands willing a symbiotic memory
To arise and enlighten us, to answer
All our wandering questions, to clear
All our false steps and erroneous paths,
To make sense out of nonsense.
Kate :)
Posted by: Kate K. at September 26, 2006 01:03 AM
Hi Pam,
I have a question for you about Zyprexa. My daughter is switching from Abilify because she can't stand the akathesia. She has been on Zyprexa for almost three weeks. Last week it was upped from 10 to 20mg. From feeling agitated and restless she is now just totally flat and exhausted. Hardly speaks. In your experience, and I know you said you liked Zyprexa, does the tired-all-the-time-feeling diminish? I know it is different for everyone, but I was wondering what your experience was. She does seem to think she can concentrate a little better - she could not read on Abilify.
She has not gained any weight so far, happily.
Thanks,
Ruth
Posted by: Ruth at September 25, 2006 11:11 PM