Let Me Die in My Footsteps

Ongoing  Saga from  Olivija, AKA 'Future Corpse'

Every Grain of Sand

It's All Right !

Before being a COPDer,  I am a people, and not just any people, I am me.
It is very important to me and very important to you, that this is the way it works.
Sometimes I find it hard to keep what is happening to me in its right perspective.
Especially if breathing is my primary goal for the day.
You know what I'm talking about?  Because you've been there? Or maybe you're fighting not to be there.
If you have realized your handicap early enough, you have a good chance of never being there. Unless,
you're still smoking and the smoking really means more to you, than the air you breathe.
But this letter is not about smoking or how bad or good our health is, or is not,  at this time.
It makes a difference to me that I can no longer do all the things I used to do.
If I spoke differently I would be lying.  But, I am still the person who used to do them.
Why am I saying all of this?  Because Emily was a ballerina, before she was on oxygen.
And Emily chooses to be a ballerina now.  We should applaud Emily and ourselves
for not resting too long or tarrying too long on woes or grief.
Before I was a COPDer, I was me. And as much of me that can, will always be.

freddie, on a golden day
.
Forever Young

Subject: DREAMS and Videos
        Date: Sat, 8 Jan 2000 09:37:02 -0500
       From: Boo-mistress <o2@OLIVIJA.COM>
 

Dear Members,

Last night as I drifted off to sleep after saying my prayers for members on the list and others, my last waking thought was
of an elephant sitting on a cyberfriend's chest.  Well, I had a dream of a "maybe cure" for people that this happens to.
Maybe after you hear the idea some of you could give me some feedback on what you think of my "simple idea."

Ok!, here is the idea..... everyone knows that when you take a great big yawn you get a good breath of air as you push out
the co2 and intake the o2.  Well we also know that yawns are infectious.  If you see someone else yawn, you also will yawn.
 You cannot keep from yawning.  You don't have any choice in the matter.  It is an instinct we are born with.  Like babies are
born sucking and ducks are born swimmers.  So my idea is to get a video tape made of different people yawning, and
whenever we get visited by chest-sitting elephants, we can play a video of people yawning and we can really get some
good air exchange during length of video.  What do you think?  and how do I get someone to shoot such a video?

Just another tangled web unraveled in the cobwebs of my mind at 2 am in the morning.

Your friend in Pa.
The Boo Mistress,
Olivija
Blowing in the Wind
-------------------------------
Subject: Re:  DREAMS and Videos
   Date:  Sat, 8 Jan 2000 09:47:48 -0000
   From: Ron Peterson <ronpete@PRIMARY.NET>

This is a super idea and I will volunteer to do the editing of tapes of people that they shoot and are sent to me and put something out to whoever will volunteer to do the distribution.   Email Ron for address where to mail tapes to by us mail only please. UPS can't deliver    Sincerely, Ron
-------------------------------

My Back Pages

Not Dark Yet

Precious Memories
 

Saturday, Jan. 15, 2000
Your visitation to my site is always appreciated.  I sometimes wonder what is going on in the head of those who drop in to read of my life with COPD.  Are you checking up on how long it will take to finish me off?  I suppose I will never know your true motives any more than you will ever know what it really feels like to live with a disease that you know is killing you.  Sometimes I even think I can feel my life seeping out of me, drip by drip.  The life forces slowly seeping away day by day a little less life force remains.  A little less lung function is present. A little more shortness of breath is present.  A more concerned effort to exercise harder.  Eat healthier.  Research harder for new information that something new has been discovered or invented to rejuvenate lung tissue or prolong the  life of someone with lung disease.  Anything could have happened while I napped, I think (or hope)  but, that is just a dream from some drugs they have me on.
No matter what I do or how I try to become involved in other activities, it always comes back to this.  This is the ax that hangs
above my head, waiting to drop like a guilotine blade to separate my life from me.  Even today, 14 years after first being diagnosed, I want so badly to be able to scream and shout and protest that this can't be happening to me.  I have to much to do, to much to give, to much to take.  With a normal lifetime and normal lifespan there would not have been enough days to spend my energies.  I'm too full of it.  Too full of life.  Too in love with it.  So enthralled with it.  I can still feel it out there calling to me.  I can even smell it in my nostrils, or is it only the memory of the smell and feel of it.  Well, no matter if it is real or only my memory of what was, it is all I have left in what's left of my world.  I guess even after 14 years I am still stuck in anger.  I know I passed denial because the realities of the disease jump up and asault my withering body constantly.  I can't even enjoy the luxury of a good cry as I become so short of breath that it is indescribable.  It is not a pretty picture.
And if it wasn't bad enough for me, let me tell you what it is like for some of my family.  My mother and my brother who live out of state are so glad that I have a wonderful husband who has stood by me and is my caregiver.  As that frees them up from having the responsibility.  Once a year at Christmas, Mom comes to visit for a week and cleans linen closets and China cabinets and  things that the weekly cleaning crew doesn't do.  My brother I never hear from unless I call him.  He is a very private person. I have always felt I was stolen by gypsies and babies switched or something.  I have nothing in common with my mom and my brother.
My only son, born in 1960.  I do not know where he is today.  The last I knew he was in Nashville and doing drugs.
My oldest daughter is in the military and stationed in Germany.  She will not be back in the USA until mid 2001.  My baby daughter is married with a 7 and an 8 year old boys.  They live in Louisville, Ky.  We stay in contact and she will come if I need her and she has stayed here in the past to help.  She needs to be with her husband and her own life.  My husband Donald is a saint.  I am not alone when I say this.  Everyone says this about him.  I hate what he is loosing by being saddled with me.  Remember this is me saying this, not him. He goes to work, calls me throughout the day to check and see if I am ok.  Makes my lunch for me before he leaves, fixes our breakfast before he goes to work.  Comes home and makes dinner for us.  Does daily housecleaning.  We have a cleaning lady that comes half a day, once a week.  Don helps me with my baths and up until this week shampooed my hair until I found someone who will come to the house and do it for me.
Recently the company Donald works for ok'ed him working at home.  They put one of their CAD stations hooked to their company hookup here at home.  We turned my dressing room into an office for him, which was ok as I just moved all my clothes into closets and dressers in the exercise room.  Now Don is at home with me all the time except he still has to go in about 10 hours a week at couple of hours at a time for meetings with people in different labs.  Most of the meetings he just conferences with on computer at home.  I feel like not only do I not have a life anymore, I am condemning Donald to the same existence I have to live.  Why should he be stuck living like this.  He still has a life and he still has a strong healthy body.  And that makes me so sad when I think of all he is missing by being here with me.  He is so strong emotionally and every way. Why should he have to suffer also?
O LORD PLEASE HELP ME LEARN THIS LESSON YOU HAVE GIVEN ME.  I know there is a reason for all that happens in our life. Please god, give me the insight before all my mental capacities are lost with the oxygen depravation that I experience.
Thank You Lord for another beautiful day. (even though the temperature has been around 0 for days.)
 
 

It's All Over Now, Baby Blue

Lay Down Your Weary Tune

I Shall be Released
 

Wednesday, Jan. 19, 2000
Here I sit in the early morning hours genteelly typing away at this keyboard like I really had something important to say. Whether or not it is important has little
to do with the fact that it is good cheap therapy to keep me from going off the deep end. (If you know what I mean, Jelly Bean) I feel so up some days and really enjoy just sitting here at my keyboard typing away or practicing on my graphics tablet.  Trying to become proficient as a computerized graphics artist.
Also, there are so many novels and interesting things to read that I can never read all I want to read.  There are so many projects like finishing my embroidered tapestry that is about 3/4 done.  It is large enough for a queen size bed.  I also have purchased material to cover a bed/couch in the exercise room that I have
ne idea when I will get around to finish it.  I guess I will have to live at least another 5 to 10 years to finish all these projects.  I also would like to get back to some water and acrylic painting, that I have not had time to do in a long time.  A peek at my Artist Page if you want to look. Projects like this and all the other creative things I want to do, keep my spirits up and make staying at home all the time not so bad.
I do like going outside though and I just despise winter time. It is 20 something degrees F outside tonight and they say we will have snow on the ground when we wake up in the morning.  This is not good news to me.  I am a warm bloodied animal and I hate the cold.  So I have to stay inside most of the winter months.  This is when depression, cabin fever or panic sets in.  Doesn't matter what you call it, it is not a pretty picture, and it all has the same result.
A real bummer to deal with.  One of the things that no one usually talks about or they just skim over is what does it feel like to be dying.  To live with a disease and watch it age you faster than others around you are aging.  To watch your energy level drain right out of you.  To know you even have trouble standing
up washing dishes.  To know you have to have someone else wash your hair for you and you have to have help more often than not with your bath.
Very, Very often I get into my pity parties and think how sad it is that such a sweet, charming, witty, talented and beautiful person like myself (tee hee) could
be laid to waste by this gosh-awful disease of COPD.
But I find my salvation of feeling sorry for myself in looking at things from a different perspective.  I have to look at things from the cup is still half full rather than it is half empty.  I have so much to be thankful for.  I cannot afford the luxury of weeping over what I do not have.  I must find reason to rejoice in all I do have.
I know that there is a reason for all that happens in a persons life.  It is up to me to try to find out why my life is as it is.  In some low points in my pity parties, from the past I can remember thinking "what did I ever do to deserve this?"  Then I had to stop in mid thought and rethink that thought.  How could I ask that question without asking the same thing about all the wonderful things that have happened in my life that are too numerous to mention here. I have had more
wonderful things happen to me I know than I could ever deserve.  So deserve is not a word that applies in either the good or the bad that have happened to us in our life.  Things just happen and it is up to us to figure out our own life and how to live it with the cards that are dealt us.
Another point that has been on my mind a lot lately is people treating others unkind.  It is happening to me now and has been for a while.  I do not know if the person is even aware that they hurt my feelings.  I understand that others have had their feelings hurt also, by this person.  I really would like to believe that they
were oblivious to their unkind handling of other people, rather than think it was intentional or non caring.  Anyway I have just been ignoring the problem, because I did not want to upset myself by confronting the person or getting into a confrontation with them.  I suppose avoidance is the answer for now.
I will wait and see if any of my faithful followers have a solution for me on this one.  Mail your ideas on how to handle this problem to here to me..
I want all who read this that I do not know how anyone could live with this without a belief system that is strong enough to sustain them.  A desire to keep

living, and a reason to live.  For all of you out there who are recently getting diagnosed with COPD/Emphysema, let me tell you this.  You have lots of good years ahead of you if you do a few basic things to insure it.  You must stop smoking immediately.  Exercise, exercise exercise.  They can't bury you if you are moving.  Get a good pulmonary doctor.  Not a GP.  But a pulmonary specialist.  Read all you can about your disease and all related items.  Learn all you can about your disease so YOU can co-manage your disease with your doctor.  Know about your disease and your meds and your body so you can discuss your health on an equal basis with your doctor.  We know you don't have a medical degree, but you have something the doctor does not have.  You live in that COPD/Emphysema body and you have that knowledge that no degree can give you.  You must learn how to communicate with your doctor to get the best health care possible and you can only do that if you are knowledgeable about this disease.  There is knowledge of this disease out there.  It is up to you to dig it up.  Start here on
Olivija's COPD Research page, then move on to Bookmarks and related sites.
Here is a page of Search Engines to  help in Medical research.  Get busy learning to live with it, or the alternative is to die of it.
 

He was a Friend of Mine

Shooting Star
 

Tuesday, Jan. 25, 2000
 Today, when I awoke, I suddenly realized that this is the best day of the rest of my life!  There were times I wondered if I would make it this
  far; but I did!  And because I did I'm going to celebrate!  Today, I'm going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.  I will go through this day with my head held high, and a happy heart. I will marvel at God's seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the
  flowers, the birds. Truly, they are not simplistic, they are in reality miraculous marvels, They are surely miracles. Today, none of these miraculous creations will escape my notice.  Today, I will share my excitement for life with others. I'll make someone smile. I'll go out of my way to perform an unexpected act of kindness for someone I don't even know. Today, I'll give a sincere compliment to someone who seems down. I'll tell a child how special he is, and I'll tell someone I love just how deeply I care for them and how much they means to me.
       Today is the day I quit worrying about what I don't have and start being grateful for all the wonderful things God has already given me. I'll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.  And tonight, before I go to bed, I'll raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for
  these magnificent treasures. Like all the other many, many treasures he has put into my worked.  As the day ends and I lay my head down on my pillow, I will thank God for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because I know tomorrow is going to be the best day of my life!
It is not every day that I feel this way, but it is on most days.  And every day I try to feel this way.  I work at feeling this way.  It is the only
healthy way to deal with adversity.  Let your thoughts be lifted.  let them soar.  Get new views and new perspectives on everything. As we all know things are never as they seem.  Not time nor space .  I feel somehow that more than one thing can exist in the same space.  I do not
know how this is possible but I believe it is true.  I believe that time past and present and future can and do co-exist.  This too I cannot explain,
but I believe it.  I believe also in reincarnation.  We keep returning, and given chance after chance to get it right as our God does love us and doesn't want any of us to fail.  I guess by most people's standards I might be considered a 'nut case.'  but, I am harmless and I will not judge you because you do not think like I do. Tolerance of others and their beliefs should always be respected, even if they are not our ways.
I do not want others to judge me, therefore I don't judge them.  Who am I, to think I am better than someone else?  Who am I to think I should be someone else's judge.  God is so good and so gracious, but, somewhere in the back of my mind There just might come a day we would wish
we  had not judged someone else such-and-such.

Highway 61 revisited

PEOPLE
Some People are important to you, Some people are unimportant to you as they cross your life, touch it with love or carelessness and move on.
There are people who leave you and you breathe a sign of relief and wonder why you ever came into contact with them. There are people who leave you and you breathe a sigh of remorse and wonder why they had to go away and leave such a gaping hole.
Children leave parents; friends leave friends. Acquaintances move on. People change homes. People grow apart. Enemies hate and move on. Friends love and move on.
You think on the many who have moved into your hazy memory. You look on those present and wonder. You find you are made up of bits and pieces of all who ever touched your life, and you are more because of it, and you would be less if they had not touched you. All of them.

ARE YOU READY?????

Living through the pressures of life can be compared to walking through fire. The Old Testament prophet Isaiah believed that if you have faith in God, you can walk through fire and not be burned. He didn't promise that you won't feel the heat, just that you won't be burned.

     To Find out How to walk through life's Hot Spots ...... Visit:     http://FireWalk2000.com/    :-)

    * Keep on walking. A surefire way to get burned is to stop walking. When you are afraid, or under extreme stress, or hurting --
keep going. You will get through if you keep dealing with the everyday tasks at hand to the best of your ability.  Persevere !!!

    * Remember that this difficult time will pass. It may feel that you are in a repeating time warp, but realize pain is time-limited. All problems have a beginning and an end. * !!! Be Patient !!!

    * Make rough times work for you. Not everything is good, but the Bible reminds us that everything can be used for good if you submit your will to God. Look for ways to learn, grow, or cope in your pain or stress. * !!! Have Courage !!!

    * Take "what is" and make the most of it. Make lemonade from your lemons. You are not called upon to create perfection from every situation, only to make the most of it. Don't waste your time on ceaseless complaining, but look for meaning and joy in all situations. * !!!    Be Content !!!

    * Clean up your own trash. Stand on your own feet and don't try to blame others for your problems. You are not a victim. Choose to live the rest of your life with a controlled response to what is happening. * !!! Take Responsibility !!!

    * Be true to you. You will have more strength for dealing with ordeals in life if you have the courage to be true to your own values. Hypocrisy destroys internal energy. * !!! Model Integrity !!!

    * Be gladder than madder. Expressions of gratitude calm the soul and clear the mind. * !!! Show Gratitude !!!

    * Have as much fun as you can. Anticipation of fun raises the level of your energy. Learn to laugh through your
trials. * !!! Display Humor !!!

    * Determine what is within your control You cannot control what happens to you, but you can choose the frame
you put around your experiences. You can choose how you will deal with all situations. * !!! Exhibit Internal Control !!!

    * Be enthusiastic. Enthusiasm literally means, "God in us." If He is in you, let your life so shine. Learn to love life. *
!!! Show Your Passion !!!

Shot of Love

O===============================O
Mountain Wind

Exploring Health, Self-Knowledge, Consciousness & Self-Transformation Through Natural Breathing, Taoism, Chi Kung, and the Ideas & Practices of G. I. Gurdjieff    http://www.breath.org/

Introductory Audio Clip on the Miracle of Breathing http://www.breath.org/real-media/miracle.ram

Deep Breathing Stress-Buster Audio Clip http://www.breath.org/real-media/stress.ram

Breathing Meditation Audio Cliphttp://www.breath.org/real-media/meditation.ram

This is really a help on breathing and panic/Anxiety Attacks.

A SIMPLE POWERFUL BREATHING PRACTICE

Though this practice can be done any time of the day or night, it is especially beneficial in the morning, just before you get out of bed. This practice will help detoxify your inner organs. It will help center and energize you for the day ahead. Over a period of time, it will begin to transform your breathing, making it deeper and more harmonious.
1.  Lying on your back with your feet flat on the bed and your knees bent (pointing upward), follow your breathing for a minute or two. See if you can sense which parts of your body your breath touches.
2.  Now rub your hands together until they are warm.
3.  Put your hands (one on top of the other) on your belly, and watch how your breathing responds.
4.  You may notice your belly wants to expand as you inhale and retract as you exhale. Let this happen, but do not try to force it.
5.  If your belly seems tight, rub your hands together again until they are warm and then massage your belly for a couple of minutes, especially right around the outside edge of your belly button. Notice how your belly begins to soften and relax.
6.  Now put your hands on your belly again and just watch how this influences your breath. Do not try to do anything. Simply watch and enjoy as your belly begins to come to life, expanding as you inhale and retracting as you exhale.
7.  When you are ready to stop, sense your entire abdominal area, noting any special sensations of warmth or energy. Let these sensations spread into all the cells of your belly all the way back to your spine.  This simple practice can have many benefits,
especially if you do it on a regular basis. Remember that you can try this practice at any time of the day or night, sitting, standing,
lying down, whatever is most practical for you. It is also an excellent practice to work with whenever you are anxious or tense,
since it will help relax you and center your energy.
I definitely would recommend this practice to all  as an "urge fighter" to combat desire for a cigarette.  Instead of giving into your
urges and 'lighting up' do this breathing exercise.

Silver Thunderbird
(Marc Cohn)

Watched him comin' up Winslow
Down South Park Boulevard
Lookin' good from tail to hood
Great big fins and painted steel
Man, it looked just like the Batmobile
With my old man behind the wheel
Well, you could hardly even see him
In all of that chrome
The man with a plan and a pocket comb
But every night it carried him home
And I could hear him sayin'

Don't you give me no Buick
Girl, you must take my word
If there's a God up in Heaven
He's got a silver Thunderbird
You can keep your El Dorado
Man, the foreign car's absurd
Me, I wanna go down
In a silver Thunderbird

He got up every morning
While I was still asleep
I remember the sound
Of him shufflin' around
Right before the crack of dawn
Is when I heard him turn
His motor on
And when I got up they were gone
Down the road in the rain and snow
The man and his machine would go
Oh, the secrets that old car would know
Sometimes I hear him sayin'

Don't you give me no Buick
Girl, you must take my word
If there's a God up in Heaven
He's got a silver Thunderbird
You can keep your El Dorado
Man, the foreign car's absurd
Me, I wanna go down
In a silver Thunderbird

Down the road in the rain and snow
The man and his machine would go
Oh, the secrets that old car would know
Sometimes I hear him sayin'

Don't you give me no Buick
Girl, you must take my word
If there's a God up in Heaven
He's got a silver Thunderbird
You can keep your El Dorado
Man, the foreign car's absurd
Me, I wanna go down
In a silver Thunderbird

Oh, Me I wanna go down
In a silver Thunderbird
 

Paul,  I know you and your good buddy, Claude, are breathing easy
now and cruisin' in a "Silver Thunderbird".............Dusty Oliver
Simidust@aol.com

Bill Poplett, Claude Baril, Richard Heering and Paul Marks

Where Teardrops Fall

Alpha-1-Antitrypsin Deficiency Site

What Was it you Wanted?

Today is Monday, February 7, 2000
My server or a trunk line or something is down again and I can't get my email or access the web.  So now is a good time to get caught up on my journal here.  I thought you might today want to know some of the things I think about with this disease.  Which does not mean that all the people with this disease think about the same things I do.  I can't tell you about them and what they think of, I can only tell you about me and my thoughts and my life.  My life is pretty lonely.  Everything in my life is different  from everyone else's.
Am I the only one affected by all the death of our friends who are leaving us in greater and greater numbers?  I hear of the passing of
a friend and a great feeling of emptiness overcomes me. A larger and larger void grows .  This void can be described as akin to the Grand Canyon.  It's not as if I haven't considered my own mortality for a long time, but now it is all consuming and it sickens me for many reasons.  I can't help wondering what it will be like for me at the end. But, at the same time I hate the fact I can not tear myself from this morose obsession I have with my own mortality.  I tell myself to 'get a life' Yet I know that any life as others know it,
and as I use to know it are gone from me forever.  That fact in itself runs the gamete of emotions in me from anger to fear, from sadness to psychosis.  I have to consider the possibility that 'everything happens for a reason and  there surely has to mean there is 'reason for this happening to me.'  That it is up to me to figure out what that reason is that my life has taken this direction and not just to figure it out but to act on it.  I dig into my very soul for these answers. I search feverishly, wanting to measure up, and knowing all along there is no way I ever can or will measure up to what we all know in our heart of hearts.  Thank god for his wonderful Grace that will and does save us all. And provides my sanity in the face of this insane disease.  In the face of the shortness of breath I experience I ask myself is this any worse than Jesus' shortness of breath when his pierced hands were all that was holding him to that wooden cross and exerting all his energies to prevent oxygen to reaching his lungs.  What I am experiencing and what others are experiencing with this or any earthly hardship is truly a lesson for us to try to measure up to.  We will never completely measure up because we are human.  But, we can give it our best shot.  And we can always provide hope and encouragement for those who come after us.  Because there will be many, many more to follow us looking for hope and help in this disease.  Treat all you come in contact with as a brother or a sister.  Treat them as you would like to be treated.
Take the time along your path in life to morn and remember those that touched you upon that path.  Remember them for the goodness that they shared with you and forgive them if they had hurt you.  Who knows one day you may ask forgiveness of someone, somewhere???  My heart remains heavy from so many recent losses, even though we know we are the sufferers now, not they/
They are in a far, far better place.  At peace at last and with not a thought of breath either good or bad.  It is just not in the equation
of peaceful rest at last.  "Just my thoughts" as I try to figure out "What now?"

2x2

Friday February 18, 2000
Well it is 11 PM and Don has gone to bed and Boo is curled up with her stuffed baby duck and I'm sitting here typing away at this computer like I have something real important to tell the world.  Guess what world, I don't have any pearls of wisdom today.
All I have is lots of weird thoughts now. I want to share a short story with you on friendship.  14 years ago I lived inWichita, Ks.
and was Diagnosed with severe Emphysema after a miraculous recovery from Pneumonia I am sitting here thinking about my friends I left back there in Wichita, when we moved here.  I have not made many friends since we have been here as I don't get out and go much.  I would like to tell you about my best friend though.  Her name is Anne.  I met her as she just moved next door to me in the apartment we lived in in Wichita.  I went over to talk to her husband who was on the patio reweaving some damaged lawn chairs.  She must have heard some ladies voice talking to him so she came out and we met and it was friendship right away.  She and Leroy and Don and I.  We were all good neighbors.
We played on the lake together.  Cookouts on the patio.  Out to dinner at different restaurants around town. I went through what most go through with friends lost because I couldn't keep up.  But, I had a neighbor who would come get me and drag me to the garage sales with her as she knew I loved them.  If I didn't feel like dressing me, she would start dressing me.  She kept me going and doing and we went on the lake everyday and floated around on inflated rafts.  I really exercised those arms.  Then four years later the company my husband worked for, moved the division my husband was in, to Philadelphia and told my husband to head
'um up and move 'um out.  God I hated to leave my close friend that stood by me, when the rest fell by the way.
She gave me a wonderful going away party. We still write and call each other and they have been able to come visit once since.  Besides Garage sales and the lake, we did things like Estate sales and thrift store sales, and stuff like that.  After I moved she made friends with a lady who volunteered her time in one of those thrift stores named Norma.  Seems Norma had COPD also, and no
family and no friends anymore either. My friend Anne, became friends with Norma and took care of her, when Norma could no
longer go into work. Anne would take her meals, and shop for her, and got someone
to come in when
she couldn't come herself.  She was always there for Norma.  This went on for about 6 years until Norma died.  Norma didn't
fight.  Norma kept smoking and Anne would call me and cry that she couldn't get her to fight and quit smoking like I did.  Anne,
and I use to hold prayer meetings over the phone for Norma.  Anne helped Norma because I wasn't there for her to help.  Aren't I
so very lucky to have a wonderful friend like Ann Fenwick in Wichita, Ks.  Just think "To love a friend enough to help someone else through a disease like COPD"
I really miss my friend and hope we get to see each other again.  But, we talk often and we think of each
other and we remember.......
Just thought I would share some thoughts of Love
 

Tell Me

A fool such as I

Friday, February 25, 2000
WHAT A DIFFERENCE A DAY MAKES!
I am a caregiver for my Mom.  She had lung cancer 12 years ago, and survived with surgery only, no chemo, no
radiation.  She didn't quit smoking!  Now, she has emphysema, chronic bronchitis, etc.  She just took a serious downturn
in November and is on oxygen 24 x 7.  Still hasn't quit smoking.  I'm doing what I can for her.  We are making the rounds of
the doctors in an attempt to find out if this is just the natural progression of her diseases or if there is something else going on
that we can maybe fix.

But, that's just background about me.

If you're having a down day, I really wanted to tell you about my grandpa.
Grandpa was born in 1899.  He was diagnosed with emphysema around 1940.  He quite smoking immediately.  He will
be 101 years old on February 28.  He lives alone, functions just fine, although he can't see very well.  They told him he
needed a cornea transplant when he was in his seventies, he said, no, he wasn't going to live much longer anyway.  He has
bad days when the humidity is high (goes with the territory).  But, there is life after emphysema, grandpa is living proof!

Leanne Carter

Monday, February 28, 2000

The downsides of obstructive lung disease are apparent.  Shortness of breath, progressive limitation of physical activity,
reduction of appetite, and the slow loss of one's independence and eventual life.  These are tough topics to contemplate and
face without fear and apprehension.  It's almost impossible not to be worried and have mixed or complex feelings.

Janet proved that there can be quality years beyond the natural course of the disease.  A transplant can restore so many wonderful abilities, but the results are varied.  For many different reasons, some genetic, some related to age or sex or weight
or whatever, some related to previous medical history throughout life, some related to donor quality, and some just plain ol'
random luck.... for all these reasons, some transplants go well and some do not go well.  About a third do very well, a third
do poorly, and a third are in the middle.   The average lifespan after transplant is approaching about 4 or 5 years, half of the patients reaching that milestone and the others do not.

The medicines are extremely powerful and patients with a good experience will have to take a reduced amount.  Patients
with a failing transplant may have to take extra drugs which can damage the kidneys, the immune system, cause diabetes,
allow the proliferation of certain cancers, and leave the patient susceptible to life threatening infections.  It's a tough road,
but so is the natural course of obstructive lung disease.  So which is the best path to choose?  My personal feeling is that
there is no "best" path, but both routes require strength, support, courage, and compassion.

Because of my science background, I have been able to understand much of the medical information that I have reviewed
during the last seven years.  After my diagnosis, I began searching out every piece of expert information about my illness,
it's treatment, it's natural course, and the prospect of transplant.  I continue to spend many hours each month researching
medical papers and discussing issues with physicians and researchers.  I have observed that many patients have either a
positive or negative image about lung transplant.  I prefer to hold a middle ground opinion about transplant.
It is no better nor worse than just life, which has it's ups and down.

What Janet and I talked about in some detail is the eventual failure of the organ graft due to chronic rejection.  I had
wondered how devastating that emotional roller coaster might have been.  She was very disappointed with the prospect of returning to wear oxygen... she dreaded it.  But I gained a strong feeling that she felt the freedom from the transplant was
worth all the risks, all the side effects, and all the personal costs.  Janet spoke to me like no other patient has ever.... she
really knew the score and she knew I could handle the truth, so her remarkable candor allowed me to speak freely and
discuss some tough things.  It was such a relief to just talk about death and various topics that people normally want to
hide or shield everyone from.

I know your decision with transplant is complex and evolving.  If you ever want to really "talk" about any of these things, I'm open to that.  With a little planning and scheduling a neb, I can call and we could chat anytime you want.  I'm often running around (actually shuffling around) busy with my hobbies or my writing.  We can trade numbers and try to schedule something
convenient.  No pressure, it's up to you and at your convenience.  I wish you much strength and wellness.

Stephen & Luba Trost
Hollister, CA

A Hard rain's A-Gonna Fall
 

True friendship is seen through the heart not through the eyes ...................Unknown

Friends are God's way of taking care of us. ............................Unknown

A friend is someone who knows the song in your heart, and can sing it back to you when you have forgotten the words.
....Unknown

 THOUGHTS TO LIVE BY

"Those only are happy who have their minds fixed on some object other than their own happiness. On the happiness of others;
on the improvement of mankind; even on some art of pursuit. Not as a means, but as itself an ideal end. Aiming thus at
something else, they find happiness by the way."  - - - - John Stewart Mill, 1806-1873.

A Satisfied Mind
 

Tuesday 'Leap year,' February 29, 2000
Well, Here it is that one day that happens every four years.  It certainly makes me ask myself the question, will I be here the next time the. 29th rolls around?  I know that I obscess to much about my condition.  That I am to hung up on "my condition."  I just feel I do not know enough about it.  I have to keep reading about it, and studying and searching because every day new discoveries are made and new meds are discovered.  I do not want to miss something that could save or prolong my life, if it happens. I want to be informed.  At the same time I want to be able to do other things and I do some other things, but they are things that require a minimal amount of energy, since that is all I have.  I know it is gonna be like this for the rest of my life also.  No matter how many years ahead I may have, they all will be limited in what I will be able to do.  They still will be very valuable to me and I will take as much time as given me, regardless of the restrictions that go with them.  I know my time is very limited, so i must do a lot of cramming of whatever I can still do that I still do.  I can't even forget about the realization for a little while, because I am constantly aware of not being able to draw an easy breath.  I search for every intake of breath that enters my body so that is a constant reminder of my impending demise.  I have rejected (for now) transplant by putting myself on the inactive list with HUP.  which means I am not moving up on the list.  I am in Limbo.  The list moves on, just skipping over my name, like life is skipping over me.  My reasoning being, the price for transplant for me is too dear a price.  That I cannot pay at this time.  My body cannot tolerate living after the transplant with the quantify of the toxic meds that I would be required to maintain a transplanted organ.  Surviving the operation is not all there is to a transplant.  maintenance thereafter is a chemical nightmare for most, and for people who have problems with normal meds
would have a real problem with rejection drugs and all drugs associated with the transplant
So, until some miracle comes upon the horizon I am in transplant limbo and will just try to live my life doing the best I can with the
hand I am holding.  I enjoy a few passions still and I have so many people on the Internet that I have met and become friends with.
They are just unending.  And there are so many new people every day who are freshly diagnosed with this hideous disease.  The
American Lung Association says that 30 million Americans suffer from emphysema and that it is the No. 3 killer in the US.  All these
new people need someone to talk to and tell them there is still hope.  Most think they have been handed a death sentence.  They
need someone like me to tell them (since most doctors don't or won't tell them) that it is not over.  They have plenty of years to live if they do the right things now when first diagnosed.  They didn't tell me anything.  I like most learned everything about this disease on my own.  And for me I had already made a lot of mistakes that I would not have if someone had told me how to avoid them.  I'm here on the web to see that information is here for those who want to prolong the decline as long as possible.  i really resent that doctors do not share more.  I have found though that the more you educate yourself about your disease and your condition, the better chance you have to take an active part in your treatment plan with your doctor.  I feel that we should be informed or what is available for us but we need to have choices in our treatments.  Of course you have to understand what all is involved in COP D/Emphysema
so educate yourself by reading all you can about the disease.  The test that go along with it.  The medicines available.
In Real Estate it is LOCATION, LOCATION, LOCATION.  In preservation of your life it is EDUCATION, EDUCATION, EDUCATION.   Well that's enough ranting on this rare date.  Life..... It's a good thing!!!

Wednesday March 8, 2000
Well, today was my 4 month visit to HUP in Philadelphia, I had a discussion with my doctor regarding the telephone conversation where I told him I wanted to be put on the inactive list.  We just discussed where I would remain on the list and how I had to
retain staying on the list inactively.  I am glad I have that over with. It was bothering me that I was not being completely honest with them sooner. I just did not know how to let them know.  Just as I don't always know how to relate to feelings.  As I seem to spend more and more time dealing with my feelings. Here is another beautiful poem by Glenda Jones who left us on Saturday the 15th of  Jan. this year.

SADNESS I CAN'T LAY TO REST

Dear Lord what has happened to me I can't change
There's a sadness in my heart I can't lay to rest
I need one of your brightest stars to shine down on me if you can arrange
It seems like my faith, hope, and love is being put to a test
Right now I need all the strength, courage, and love you can give me
Please light my world and keep me a candle burning so I can see
I don't want any more pain, sadness and sorrow
I need my faith, hopes, dreams and a tomorrow
Sometimes my heart beats like thunder because I'm so scared
This sadness I can't lay to rest is always near
I cherish every breath Dear Lord you give me
Please take this sadness from me so I can rest
Now I lay me down to sleep
I pray Dear Lord my soul to keep
Helping others, my faith and Love I have for others is what I know the best.

Reading her poems seems to calm me down and still my pulsing heart.  Do any of you others out there ever want to sneak off some where, anywhere, where no one else is around and let out an ear piercing loud scream even if it took your last breath.  Well I would just love to but I have found that I can't even have a good cry as I get so choked up that I can't breath. I go into spasms and respiratory distress. Bummer!!!  What I wouldn't give for one good loud, long winded out - of - sight scream!!!!  That's what happens when you spend the past 10 or so years of and on things that could go wrong.  Building a good 'ol case of panic attack. I am
always talking about attitude adjustments with others who make excuses why they can't exercise.  So I give them my little pep talk and let them know we all go through this at one time or another and we just have to be strong and do the thing regardless.  It's not a matter of "I can't!"  It is a matter of "How can I?"  Just To know I have succeeded getting someone to exercise and to quit smoking is something  that gives me a great sense of satisfaction.  To know I had any influence at all in changing someone's life for the better  To
let me know that I was a part of helping someone cope with this disease makes all this work I have done on the web, and all the research so worth while.  You know what it ain't easy having this damn disease COPD.  It is a real Pain in the Lungs. (mostly)
Do you know it would be very easy for me to not do anything.  Just sit back on my behind and become a couch potato. But I know there are so many newly diagnosed COPDers and so many more expected to be diagnosed.  There has to be people like me out here to give them the information when they start looking. That's about enough for today.  I will write more when the" swallows return to caperistraino."  That will be on March 19th.  The day I become 59 years old.  God, if I had known I was gonna live this long I sure would have taken better care of myself.  LOL

Sunday March 19, 2000
It's after midnight here now and this is what I have to say about this day in history!!!

 10:00 am - 5:00 pm...........Return of the Swallows Festival
Fiesta to celebrate the annual return of the swallows to Capistrano,

Sunday March 26
I woke up this morning knowing I could enjoy my morning because in the afternoon it was going to be clean and perge time in
preparation for the event tomorrow morning.  "A Colonoscopy"  Mary Jo who usually comes on Monday afternoon to do my
hair came this morning because I would be out of commission on Monday.  So that took up most of Sunday morning.  Then
I had chicken broth and apricot jello for lunch. I had some hot apple juice for breakfast.  At 1 PM I had one and a half ounces
of pepcid and 4 ounces of apple juice.  Then water, gator-aide, apple juice,  and cranapple juice. all afternoon until 7 PM.
Then I started all over again with one and a half ounces of pepcid and 4 ounces of apple juice.  Then water, gator-aide,
apple juice,  and cranapple juice.
On top of this Don's son and his wife who Don has not seen since they were married 10 years ago had this stopover planned to
see dad and to meet me.  Well between meeting them and my frequent trips to the bathroom, it was a real pleasant visit.  Don's
son has really changed and looks so much like dad that they could pass for brothers.  His wife seems like a very nice person and
both of them are very intelligent people.
They will now be living right outside of D.C. and promise to come back soon for a week-end visit.  They will be bringing
George their 6 ft. Iguana and I told them he can not come upstairs.  He has to live in the basement.  I told Don (when they left)
that he will have to wash everything down where george was when they leave, because they spread certain germs.  I believe that
is what Mickey died from.  (Yes the Mickey mentioned above on this page.) I need to go to the archives to look up the fungus he wrote about contacting the week he died. Will close with just the last fleeting thoughts as I last closed my eyes around midnight
were: "I hope that is the last trip to the bathroom tonight."
so, it goes........untill we meet again.
 

When the Ship comes in

        Date: Mon, 27 Mar 2000 11:50:12 -0500
Hello World,
I just returned from the hospital where at 9:30 AM they did a Colonoscopy on yours truly, so I need not mention what my
Sunday was like, 'cause you all know about the cleansing process prior to!!!!!!
Well they didn't get to finish the procedure, because they came upon a polyp and removed that one and the pain was so
intense that when it was removed they stopped and sent me to recovery.  I believe my blood pressure was way up by this time.
My doctor said to come to his office in a week and he would have biopsy of the removed polyp by then and decide what to do
about viewing further up the tunnel.
All in all I feel like an old horse that has been rode hard and put up wet. Do you think there are any young people out there who would believe me if I told them, "If I had know it would have been like this, I would have certainly taken better care of the equipment." But do remember this:  "I'm still moving and not buried yet."
And so it goes.

Tonight I'll be Staying Here With You

A KARMA LESSON
THE REASON THINGS ARE AS THEY ARE IS BECAUSE WE ALLOW THEM TO BE !!!
THE REASON THINGS HAPPEN IS BECAUSE WE ALLOW THEM TO HAPPEN !!!

Friday March 31, 2000
Today I am grateful that I have this wonderful 'Boo Gwynne' to keep me company while Don has to go in to work this morning.
Don will be back by noon but I want to Thank you so much Lord for blessing me by bringing Donald into my life and thereby
enriching my life.
there is a subject that I have been wanting to check out for sometime now and I think I am going to do some real in-depth investigation into "KARMA."  I really believe it could answer a lot of questions as to the "Why" we all are searching for in our
life.  You know the "reap what you sew" theory.  Another thing I want to do is start a grateful Journal.  That will be another
page by itself, and probably want be of any interest to anyone but myself and the idly curious.  But, I think that in itself  is
really important to a person to help keep them positive and grateful for even small blessings.  If you spend your energies in staying positive and being grateful, how will you have time for being negative and downcast about anything?  Since I consider myself a 'work in progress' who has wonderful, charitable, understanding and forgiving days, most of the time.  I would like to find ways
to have more of these type days.  In fact I don't ever want to have any other kind of days.  I sincerely want the rest of my life to count for something positive for others. I believe that studying more about Karma will help me along those lines.  I also believe
that keeping a daily journal of  "Things I am grateful for" will help achieve that goal.
About my colonoscope results:  I have an appointment with my doctor on the fifth of April to let me know if it was cancerous or
not and what they want to do about the possibility of more polys being further in. I certainly do not want to repeat this process
ever again in my life.  Very unpleasant even under normal conditions, but more so than most when you cannot pe put under very much as your respiration will not allow it.  My lungs might collapse and I would wake up on a respirator (if I was lucky)
Well I guess this is something else not to worry about, just put it all in God's hands and he will take care of all events in my life.
Whatever may arise, it is not a problem.  It is a lesson I have been given to learn.  It is the result or a better word would be the
cause  of some effect put into play by myself either by deed or (conscious or unconscious) thought. see?  Life is a study to improve
ourselves to not jut do good,  or think good but, by become a part of good.  I think the more I study on this the more I will see
how to accomplish this.
The seasons are changing, it is changing from winter to spring and the pressures and the atmosphere is changing.  Along with
it my breathing is affected dramatically.  I get really short of breath along about sundown and very full of mucus.  I wake up
in the mornings full of mucus, and nose dripping profusely.  Naturally all this plugged up air passages makes it hard for oxygen to
get in through the cannula.  This is depressed somewhat with sudafed and allegra all spring and summer and into the fall past the growing season.  Other that that and complete shortness of breath.  I am completely all right.
Don is working at home and only has to go into the office two or three times a week for about 4 hours at a time.  Other than
that and running errands for us he is with me all the time.  He is the angel that God sent to me to help me through this most difficult disease.  I could ask myself a million times what I ever did to deserve getting such a insidious disease.  I also could ask myself
what I ever did to deserve the love and devotion of a wonderful faithful loving and caring husband.  The answer to both questions
is the same.

The Times they are A-Changing

Saturday, April 1, 2000
Today I am grateful for my wonderful Husband, my best friend, my chief cook and bottle washer, my benefactor, my advisory and
my caregiver.  Thank you dear Lord for Donald Gwynne, the love of my life.  who deserved better than a sick wife.
Today has been an extremely difficult day for me trying to breath.  I seem to be producing an enormous amount of mucus. I am able after much difficulty to eliminate the mucus.  It is just exhausting to get the job completed thought.  Tonight as I sit here and type I am thinking of my friend Fred who is on his way to Europe with his granddaughter.  They will make a stop in Paris to put his wife,
Heidi's ashes to rest.  Then he and his granddaughter will sightsee and enjoy paris in the Spring.  I am so envious, and also happy that he can make the trip.
I also am thinking today of my sweet Boo Gwynne  who is a very old lady doggie.  She is 14 years old and has already had one
knee replacement.  You can see in her eyes sometimes how tired she is.  At other times she frolics and rolls around all over Don
and I  loving on us.  I think our loving her and spoiling her so much has keep her alive for so long.  She still is our sweet baby
and will be spoiled forever.  I hope that Boo dies before I do as I know she could not make it with out me.  She will start shaking all over if she knows I am going to leave the house.  She is one devoted little pup and we have even considered getting a pup sitter when we do have to both be away from her.
My daughter is scheduled next week for a colon scope.  The same thing I went through with last week when they removed a polyp.
She has been having problems for a while and now they have decided to do this.  I would ask for all of you who would to pray for my daughter Aleshia who is 31 and the mother of a 7 and 8 year old sons.  They are my grandsons and they live in Louisville, ky
and their name is Ian and Daevid Please pray for my daughter who is about to go through through what I went through last week.
Just goes to show you that neither of us is a perfect "butthole." Not funny though. Please pray for her through her ordeal.
I had to do something on Tuesday that I hated to have to do.  I have a lady come once a week to clean the heavy stuff that I cannot do and Don does not have time to do.  Well she has been halfway doing the job and when I have tried to tell her how to do it
correctly, she just argues that she does it her way and she gets it clean.  Well it may be cleaned to her standards, but it was not cleaned to my standards and since I am paying she has to do it to my standards.  She never could understand that so I fired her and she freaked out.  I hated to have to do it.  I hate to confront anyone about anything and I hate for others to put me in the position
to have to confront someone.  She even went to Don to get him to do something.  (That, I could not believe.)  Don told her it was
between her and I and it was I she had to please since I was the one who hired her.  Man we are talking here about a person who is so self centered that nothing I could say would apease her. She just said that she doesn't think I will find anyone who will clean to please me.  I just wish I had thought at the time to tell her that it was not her problem what i found or did not find.  I am just very
glad that chapter in my life is over and I now have someone in that I believe will do the job for me and I will not have to stand over this lady's shoulder to see that she does it right. This new lady I believe can really see dust and dirt and not have to be told where and what to clean.  I sure hope this one works out as I do not want to go through firing any one ever again.  it is an unpleasant event for all concerned.  Well good-night to all and sweet dreams of breathing easy.  And so it goes....................

Tomorrow is a Long Time

Monday April 3, 2000
I spend just a whole lot of time thinking about my life ad the years i have used up and there are more used up than there are in front of me.  Like it is all down hill now and how there just isn't anything I can do about it.  It is all downhill from here on out.  But I'm not the only one who is aware of the swinging pendiumn.  Here's what Steve Potts has to say on the subject.

Pottsy's Hope
Terminal but hopeful

In thinking about the span of life and the time that I will spend on this earth, I have come to the conclusion that the condition of all men is terminal. There are two distinct times in life that we have no control over that bring me to this decision. The first is the day of our birth and the second is the day of our death, over both of these we can exercise no human control. We may think that we can cheat death or bargain with it or prolong our days but the fact of the matter is we cannot ultimately get out of paying the piper ,so to speak. This being the case, the condition of man from birth is a terminal one for which modern science has found no cure. I myself, being an optimist and also a realist I set forth the proposition that neither the day of birth or the day of death should be our main
concern, but the days that span between those two are the ones that we should cherish. Furthermore not one of us was promised tomorrow, ( we in faith believe that we shall see it), so we must make the most of the day that it is called today. This is a hard thing to hear for most people because the majority of us have lost loved ones to death. Some of us are facing death due to disease or conditions that are beyond our control and the rest are just not sure and do not want to face the inevitable. With this being the condition of man it may seem to you a hopeless cause as some do loose hope when faced with their own mortality. But I see it as
an opportunity for hope to flourish and grow.
Hope is a strange thing that causes you to believe in things beyond the seen and look to the things that you cannot see. The future is a creation of mans hope, for a man will put his trust in the future even though he does not know what it will bring. As we realistically know there is no concrete, cast in stone, future that presents itself to us. But there is the hope that we have in our heart of hearts that it will bring happiness and prosperity. So therefore let us bring the condition of man up one step to terminal but hopeful. For without hope there remains only the possibility of a bleak existence from which one can draw no comfort. so lets hope against hope in this lottery we call life and look for the best in all situations. Because even though we are terminal we still can have hope. That being said we come to the real question which is what do we put our hope and trust in.
As we come to this season of easter and passover the answer becomes apparent to me as one who believes in God. Not only do I believe in God but I also believe in the Lamb of God, Jesus Christ who was sacrificed for the forgiveness of our sins on the cross of Calvary. Not only that but he rose again from the dead on the third day and ascended to the heavens and is seated at the right hand of the throne of God. This then is a cause for real hope. Jesus himself said," Let not your hearts be troubled; believe in God, believe also in me. In my Fathers house there are many rooms; if it were not so, would I have told you that I go and prepare a place for you? And when I go and prepare a place for you, I will come again and take you to myself, that where I am you may be also". In saying this to his disciples, Jesus was giving us the ultimate hope of attaining the resurrection from the dead and ascension into heaven. For in doing this himself Jesus opened the way for us who believe in him and in the power of his resurrection. Easter is therefore a time for mankind to reflect upon life, death and the power of God to raise from the dead.
Jesus said to her," I am the resurrection and the life; he who believes in me, though he die, yet shall he live, and whoever lives and believes in me shall never die. Do you believe this? She said to him," Yes, Lord; I believe that you are the Christ, the Son of God,
he who is coming into the world." This was part of the conversation that Jesus had with Martha the sister of Lasers, whom Jesus raised from the dead and thus showing the power of the Son of God to conquer death. There are many other things that Jesus said and did to show his power and authority to us who will believe and come to salvation. It all in my opinion breaks down to the one verse of scripture. "For God so loved the world that he gave his only Son, that whoever believes in him should not perish but have eternal life. For God sent the Son into the world, not to condemn the world, but that the world might be saved through him, He who believes in him is not condemned; he who dose not believe is condemned already, because he has not believed in the name of the only Son of God." We must believe in Jesus the only Son of God and act upon that belief and come to the father by Him. For it is said that if we confess our sins he is faithful and just to forgive us our sins and to cleanse us from all unrighiousness. Also, as far as the east is from the west so far does he remove our sins from us. So therefore let us draw close to him in prayer and become the true children of God that we are meant to be.