Yes, YOU Count
You are not your body. It is just something you wear for awhile, because living in the earthplane is infinitely more
meaningful and more involved if you are encased in its trappings and subject to its rules.
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AFTER A BRIEF BACKGROUND OF MYSELF I INTEND TO USE THIS PAGE AS AN ONGOING DIARY OF EVENTS OF INTEREST IN MY LIFE. UNTIL I BECOME THAT CORPSE, PAGE WILL BE UPDATED EVERY WEEK OR SO. I AM HOPING TO USE MANY MEG ON THIS PAGE ALONE. SOME OF YOU WILL PROBABLY TAKE BETS ON HOW MUCH MEMORY WILL BE USED ON THIS PAGE, UNTIL I TRAVEL TO THE NEXT STAGE OF MY DEVELOPMENT OR REWARD, WHATEVER MY HEAVENLY FATHER HAS IN STORE FOR ME. I WILL HAVE BOO POST THE FINAL AMOUNT OF MEMORY USED. FOR THOSE INTERESTED, AT THAT TIME.
Chronic Obstructive Pulmonary Disease, which includes Chronic Bronchitis and Emphysema, is the
FOURTH LEADING CAUSE OF DEATH IN THE UNITED STATES.
Click on COPD If you are really interested in knowing more about it.
I continued working until 1988, when I went on permanent disability.
That was 10 years ago. One point I want to make very plain here for everyone who thinks there is a cure or that
COPD can be reversed........WRONG. You can, with a lot of effort on your part, postpone the inevitable. But you
cannot stop it from eventually taking it's toll.
If you have COPD you have a Death Sentence. And it is up to you to manage your disease by doing all you can to
educate yourself, in regard to taking care of yourself. The amount of your suffering and the number of years you
have left are in your hands alone. EDUCATE YOURSELF ABOUT COPD.
There have been good days and there have been bad days. But there have been no days as I once knew them.
Days of running and playing and play wrestling with my children and husband. None of the things where one uses
energy. I spend most of my time in reading, watching others, writing and doing art work. And oh yes the computer.
I also have reduced my husband to be a caregiver as he now has ALL the housework to do. Plus he has to help
me with baths and dressing. He has to do all this after he puts in his time on the job every day. And I am very lucky
as so many of my friends in support group have been deserted by their mates who could not for one reason or
another be bothered with the role of caregiver and support person.
I have other medical problems like sinus problems and severe asthma and allergies and MCS
(multiple chemical sensitivities) I have to almost live in a bubble. I cannot be around you if you wear deodorant or
after shave or fingernail polish. I cannot go to a beauty shop. I cannot go to church. I have to shop from catalogues.
I cannot have anyone near me who has a cold. If I get it , it possibly will kill me as I have no reserves to fight it. It
always makes me get a runny nose and mucus which drips into my lungs and gives me pneumonia which can easily
do me in. I try to be extremely careful as I love living as much as the next person. During the ten years between
being diagnosed and today when I am writing this so much has happened. It took me until 1989 before I got out
of denial that I was not going to get better, that this was a progressive disease and that I surely was on my way
to meet my maker. So on October 14, 1989, I smoked my last cigarette. To try to describe the process
after the fact now is virtually impossible as all the feelings I experienced were lost the moment they occurred.
I remember some of the anxiety of wanting to scream and to cry and feeling my mind was going berserk. And I
can even remember feeling like my skin was crawling, and of feeling 'things' swimming in my veins. I had smoked
since I was 14 years old and I was 48 years old at this time. I even had several dreams of smoking. Addiction is a
terrible dragon to slay. I ate a lot of little round red and white peppermint swirls and I slept a lot and I did a lot of
Art work. Anything you can do to occupy the mind so it will not think of smoking. (RE: COPDer Page) When it got
so bad I couldn't stand it, I would go fix something to eat for myself or bake a cake or something to use my hands
and take up time. I listened to a lot of motivational tapes of "in control of my own destiny." And I adopted the
philosophy of "who's in charge? me or the cigarette?"
By the summer of 1990 we moved to Pa. as the company my husband worked for transferred us. His family just
so happened to live here and he got to spend his fathers last years not to far from him. We spent first year in
rented home looking for one to buy. By the next year we were in our own home. We did some foster care in the
first few years until I got too weak and then one of my two daughters left her husband and came home with two
grandsons and lived two years while she went back to collage. Just before the two years were up she went
back to husband and, shortly thereafter, I went on oxygen and use of a wheelchair for long trips. That was
during the hot, hot summer of 1995. It was the end result of infection that led to pneumonia and hospital stay.
By the end of the year I had decided that life was not worth living in this state of existence. It is absolutely true
what THE AMERICAN LUNG ASSOCIATION says about breathing.
They say "If you can't breath, nothing else matters," and it does not. It is like life with a clothes pin over your nose.
Started preparation for LVRS, which is Lung Volume Reduction Surgery. (subject covered on another page)
Surgery was done on Valentine's day 1996, my wedding anniversary, my Dog, Boo's birthday and the day of
love. There were complications during surgery but, I got good results from surgery. After recuperation of a
couple of weeks. I got off oxygen. I was off of o2 for almost 2 years and didn't use a wheel chair for that amount
of time. I feel I would have lasted longer if I had not gotten sick and ended up back in hospital with pneumonia
again. Any way, that is where I stand now in June of 1998. I have COPD. I still feel better that I did prior to
surgery in 1996 and I can do more but I still have to use a wheelchair on outings and I am on 1-2 liters of oxygen
LIST-SERVE SUPPORT GROUP
To join the COPD on line support group mail request to the following: COPD-request@HOME.EASE.LSOFT.COM
It will be forwarded to the "list owners" (the people who manage the COPD list). If you want to reach a human
being, you used the correct procedure.
My state of mental health today is good. My attitude is positive and my physical health is just SOB (short of breath)
My husband just returned from Jones beach where he went today with his two sisters. They spread their fathers
ashes behind and over the dunes at the beach where years before his father had spread the ashes of his mother.
I spent the day at home alone writing and playing with Boo and sleeping. I spend lots of hours sleeping and
resting my as energy level is zilch. I do not make many plans anymore unless I absolutely have to. Everything
tires me out. I will work on web pages and scanning this week. More later in my ongoing saga.
My 16 year old (going on 21) grandson lives with us and any one who has been around teenagers will know that
they will tell you they know more than the adults do. Adults do not know what they are doing. He is a constant
source of entertainment and amusement. How anyone could get that twisted in their logic in only 16 years is
amazing. I can't believe half the stuff he spews out of his mouth. I do my best to give him gentle doses of reality
and some of it is sticking. I need him as a diversion from thinking about my own pain. I am lucky that I have the
opportunity to do for someone else. His needs have at times kept me from drowning to much in what is going
on with my illness. He also has problems. He is an insulin dependent diabetic. He manages his disease very well
though. Tonight I am very short of breath and tired. I have not done much today and am still exhausted. Some
days are good and some are not so good. I have two people I am writing at this time from my pages on helping
to quit smoking.
By being friends with them, I feel it helps us both. I know when you are trying to quit smoking that you need all
the help you can get. It at the same time makes me feel I still have something to contribute by helping someone.
I am waiting now to write them as they both left email for me and I cannot get a letter out to them as my
server is down. I guess it will have to wait until the morning.
Next couple of weeks are going to be traumatic for me. On Wednesday the painters are coming to paint the inside
of my house. I am moving out. I will be staying at my sister-in-laws home until????? I suppose the smell dissipates.
They are using special blended paints for my problem but I know that it will bother me to deal with this problem. Who
knows how long it will take before I can come back home. Hopefully it will be on the weekend. I am having some short
of breath days which we COPDers refer to as SOB, for the obvious short-of-breath. The heat has been in mid to high
90's with heat index up to hundreds. Fortunately I don't have to go out in it. I stay inside and still feel it. I have spent
a couple of late afternoons for an hour or so on the patio enjoying my plants and roses. I have some pleurisy in my
chest and I feel that constantly. All in all, I am feeling good and I have not had an infection since February. My heart is giving me some reason for concern as to palpitations. As COPD progresses the heart works harder to pump more blood to get more oxygen to your body and it puts a strain on your heart. A lot of people who have COPD acutely end
up dying from heart conditions brought on by their overworked heart trying to compensate for lack of oxygen caused by damaged lungs. Sort of a catch-22. This will be last up date on this page until I get back home after house is painted.
I am back in the house. Came back on the fourth day as it had been aired out real good for me. The house looks
absolutely so much brighter. So much so that I may stick around a few years longer. I have been busy though, at
my snail pace I have been putting all my belongings back in order. They were all waiting for me when I came home
piled in the middle of each room. I have about half of the stuff put up by now and I have been doing work on my
pages and getting plenty of rest. Last year my Favorite Aunt died. (I will Have a page on her called a niece) We
were very close and she died young of cancer of the Thymus. For those of you that believe in Omens I dreamed of
her this afternoon. In the dream I was shopping in a second hand store (which I use to do a Lot) I found three items
that were good as new. A beautiful large leather bag. A pair of leather sandals and I do not remember the third item.
As I was leaving the store I could not find the sandals and I commented to my Aunt how nice they were and that I wished I could find them again as I really wanted them. She told me not to worry as I would not need them. The next thing I know we are traveling in a vehicle like a car but not a car and I know without looking that we are not on a road or even on the ground. One day I will tell you of all the dreams that were prerequisites to this one. There will be others. My aunt is with me. I feel her now as I type. I feel her presence when I am alone during the day. I feel her presence when I loose my temper and know she is displeased with me. I also feel her trying to soothe me and make the hurt go away. After a dream like this today it really makes me wonder if perhaps I should hurry up and tie up all my loose ends for those I love.
But I also have days I feel exceedingly good and want to do lots of things to stay around forever because I have so much to do. And so much I want to do. The world is big and wide and beautiful and I have not enjoyed enough of it. It is a big glass of wine and I want to drink it all up and there isn't enough time or energy to do all I can conceive of doing. I know I would need lots of lifetimes to do it all. I am doing good not getting any infections or colds or anything so far this summer. I hope my good luck continues. To the following I am acquiring, I hope my journal is keeping you interested in the thoughts of a foolish person who started smoking before I had any intelligence. All I had for brains when I started smoking was chopped liver I guess. I started smoking at 14. Who was I trying to impress? A 15 year old maybe? Beats me. You think you know so much in your teen years. The older you become the more aware you are of how little you do know and if you don't discover that fact, then you must know you aren't learning anything as you get older either. I tried lots of times to quit through the years but nothing worked until I really found out that I had COPD and even then I had been diagnosed for two years before I quit for good. At that point I realized I had been in denial and was ready to quit and see if I could salvage something of my life. I quit on Oct. 15, 1989 I woke up and never put a cigarette in my mouth again.
The next two months were Hell for me and Double Hell for anyone around me.
ON AMBULANCE for continuing updates of my
life, which is covered on additional pages accessed
via this ambulance.
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The history of this Poem is;
Robert N. Test, a reporter, wrote it as a news editorial in the Cincinnati Inquirer in the 80's.
It is used by the SCOPA agency in their literature to help promote organ donation.
The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital busily occupied with the living and the dying. At a certain moment, a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. When that happens, do not attempt to instill artificial life into my body by the
Walk to the Edge.
Play with Abandon.
Choose with no Regret.
Appreciate your Friends.
Do what you Love.
Live as if this is all there is..