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Monday June 12, 2000
The grandsons have been here with Don and I for a little over a week now. We went to K-Mart yesterday and
bought groups of toys for them, to have to play with while they were here. Last night Don also took them fishing.
Ian caught a bass and they insisted that was dinner for them so we all had hamburgers fordinner and Ian and Daevid
also had some bass for an appatizer. I really am enjoying the time with the boys. I had forgotten how much sibblings
argue and fight amongst themselves. Makes me know why God gives us kids while we are young. You just should
not have to deal with all of that on a full time basis if you are old and wore out. tee hee.
Just to change the subject a little bit here, I have been getting some comment as to the name of my journel, "Future Corpse."
Some who have read this site say that I am negative in my looking at COPD as A death Sentence. To this I reply that I
am a realist. I do not look at "ANYTHING" through rose colored glasses. If it walks like a duck and talks like a duck,
By God it's a damn duck!!!! COPD is Chronic - Obstructive - Pulmonary - Disease. In a nutshell, it is a progressively
deteriorating disease of the lungs and air passages. Most of the time also complicated by pulmonary Hypertension, which
puts more pressure on the heart to work more efficently to get more blood pumped to bring more oxygen to the lungs,
which is a vicious circle. Now I am not going to look at this event in my life as anything other than serious. I only have
one chance to grab all the gusto. Here is the catch, although I look at COPD as a death sentence, I also look at the
person with COPD as the judge (more than anyone else) as to how long that life is and what quality of life can be
expected. I have said it over and over in all my pages here on the web. The following items have got to be applied
to each person who is diagnoised with COPD.
Wednesday 14 June 2000
BLUE playdough. A pine cone. The Kama Sutra. A
needle and thread. A list of names. A red feather boa. A no-smoking sign.
A kite. These things symbolise Sue Meeuwissen.
Sunday August 20,2000
"Slow Down Therapy"
1. Slow down; God is still in heaven. You are not responsible for doing it all yourself, right now.
2. Remember a happy, peaceful time in your past. Rest there. Each moment has richness that takes a lifetime to savor.
3. Set your own pace. When someone is pushing you, it's OK to tell them they're pushing.
4. Take nothing for granted: watch water flow, the corn grow, the leaves blow, your neighbor mow.
5. Taste your food. God gives it to delight as well as to nourish.
6. Notice the sun and the moon as they rise and set. They are remarkable for their steady pattern of movement, not their speed.
7. Quit planning how you're going to use what you know, learn, or possess. God's gifts just are; be grateful and their purpose will be clear.
8. When you talk with someone, don't think about what you'll say next. Thoughts will spring up naturally if you let them.
9. Talk and play with children. It will bring out the unhurried little person inside you.
10. Create a place in your home...at your work...in your heart...where you can go for quiet and recollection. You deserve it.
11. Allow yourself time to be lazy and unproductive. Rest isn't luxury; it's a necessity.
12. Listen to the wind blow. It carries a message of yesterday and tomorrow-and now. NOW counts.
13. Rest on your laurels. They bring comfort whatever their size, age, or condition.
14. Talk slower. Talk less. Don't talk. Communication isn't measured by words.
15. Give yourself permission to be late sometimes. Life is for living, not scheduling.
16. Listen to the song of a bird; the complete song. Music and nature are gifts, but only if you are willing to receive them.
17. Take time just to think. Action is good and necessary, but it's fruitful only if we muse, ponder, and mull.
18. Make time for play-the things you like to do. Whatever your age, your inner child needs re-creation.
19. Watch and listen to the night sky. It speaks.
20. Listen to the words you speak, especially in prayer.
21. Learn to stand back and let others take their turn as leaders.There
will always be new opportunities for you
to step out in front again.
22. Divide big jobs into little jobs. If God took six days to create the universe, can you hope to do any better?
23. When you find yourself rushing and anxious, stop. Ask yourself "WHY?" you are rushing and anxious. The reasons may improve your self-understanding.
24. Take time to read the Bible. Thoughtful reading is enriching reading.
25. Direct your life with purposeful choices, not with speed and efficiency.
The best musician is one who plays with
expression and meaning, not the one who finishes first.
26. Take a day off alone; make a retreat. You can learn from monks and hermits without becoming one.
27. Pet a furry friend. You will give and get the gift of now.
28. Work with your hands. It frees the mind.
29. Take time to wonder. Without wonder, life is merely existence.
30. Sit in the dark. It will teach you to see and hear, taste and smell.
31. Once in a while, turn down the lights, the volume, the throttle, the invitations. Less really can be more.
32. Let go. Nothing is usually the hardest thing to do - but often it is the best.
33. Take a walk-but don't go anywhere. If you walk just to get somewhere, you sacrifice the walking.
34. Count your friends. If you have one, you are lucky. If you have more, you are blessed. Bless them in return.
35. Count your blessings - one at a time and slowl
In Memory of Gene Downey
Once in a person's lifetime one meets a person who is so compellingly different , that one must stop and listen to him speak. He held wisdom beyond his years, patience beyond all time, and love, more than a single heart can hold. He stopped and talked with us, no matter that he was ill. He gave us things so that we might better live
with our disease, and asked nothing in return. He gave and gave and gave and asked nothing in return except
that we respect each other and be there for each other. He left us with his inventions, his ideas, but most of all
he left us his love. If he could have traveled to the stars he would have and the stars would have been better
for his visit. If he had sailed the seven seas, he would have done that too, and the world would have been richer for his travels. We are all richer for having known this man and for his touching our lives. And Gene is now in Heaven , probably talking God into letting him put a pneumatic recline mechanism on HIS chair.
Surely, now, all my heros are gone.
Good bye Gene
When I used the above words in my tribute to Gene, I guess I did so in a little bit of humor knowing that Gene would have smiled at the reference, but I used them also to tell that no matter where Gene was, he always tried to make it just a little bit better place for those around him. He was totally unselfish in this way, and certainly Heaven is just that little bit more "Perfect" with Gene being there now.
I shall always miss him.
By: Storm <stormcloud@USWEST.NET>
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Sent: Monday, September 04, 2000 6:39 AM
Subject: gene downing
I had a chance to meet gene downing and his wife pat in person in des moines iowa in the summer of 99 for a few minutes for coffee and was surprised how thin and wiry he was as i had pictured him as a heavy, contemplative thinker he was one of a very rare breed who actually does many of the things he dreams about the kind of a man who leaves footprints in his wake
From: "Ron Peterson" <ronpete@PRIMARY.NET>
IT TOOK ME SEVERAL DAYS TO READ ALL OF YOUR JOURNAL. YOU ARE VERY BRAVE
AND I ADMIRE THE FIGHT YOU ARE WAGING AGAINST THIS HORRIBLE DISEASE COPD.
I TURNED 50 ON JULY 8, AND I WAS DIAGNOSED 2 WEEKS AGO WITH MODERATE TO
SEVERE COPD. I KNOW MOST DEFINITELY HOW FRUSTRATING IT IS NOT TO BE ABLE TO
DO THE THINGS THAT ONCE YOU TOOK FOR GRANTED.
JUST 5 YEARS AGO I WAS WALKING 5 TO 10 MILES A DAY, WORKING 10 T0 14
HOURS A DAY FOR MY HOME TOWN CABLE COMPANY. I WAS IN GOOD HEALTH AND FELT
REALLY GOOD. I ENJOYED MY JOB AND ALL THE PEOPLE THAT I WORKED WITH WHO WERE
MORE LIKE FAMILY THAN CO-WORKERS.
IN 1995 I STARTED HAVING BACK PROBLEMS AND GRADUALLY STARTED TO HAVE TO
CUT DOWN ON MY WALKING, THEREFORE I STARTED PACKING ON THE POUNDS. BY THE
END OF 1995 I WAS NO LONGER ABLE TO DO THE VIGOROUS WALKING IT TOOK TO KEEP
MY WEIGHT DOWN. I HAVE HAD A PROBLEM SINCE I WAS 8 OF BEING OVERWEIGHT. IT
HAS BEEN AN ON GOING LIFE BATTLE OF THE BULGE.
THINGS SEEMED TO GO FROM BAD TO WORSE WHEN MY 88 YEAR OLD MOTHER FELL
AND BROKE HER LEG. THIS THREW ME INTO A COMPLETE SHUT DOWN DO TO DEPRESSION.
THEN IN JUNE OF 1998 MY MOTHER WAS DIAGNOSED WITH EITHER A TUMOR OR CANCER
OF THE BRAIN. IT TURNED OUT TO BE A LARGE MASS OF MAL-FORMED BLOOD VESSELS.
SHE ELECTED TO HAVE SURGERY EVEN THOUGH THE DOCTOR TOLD HER HER CHANCES WERE
SLIM TO NONE OF COMING OUT NORMAL. ANYWAY SHE WENT AHEAD WITH THE SURGERY.
IT DID NOT TURN OUT WELL. SHE WAS IN A COMA AFTER 3 MINI-STROKES FOR 2 WEEKS.
THEN WHEN SHE CAME OUT OF THE COMA SHE WAS NOT THE MOTHER I KNEW AND LOVED.
SHE WAS LIVING IN HER MIND SOMETIME BEFORE I WAS BORN AND EVERYONE THAT WAS
DEAD WAS ALIVE TO HER, HOWEVER FOR SOME UNKNOWN REASON SHE DID KNOW ME.
NEEDLESS TO SAY, I HAD TO PUT HER IN A NURSING HOME AND SHE STAYED IN THE
NURSING HOME UNTIL HER DEATH ON MAY 27, 2000, AND JUST 5 DAYS BEFORE THAT I
LOST MY AUNT THAT I WAS REALLY CLOSE TO, AND THE DAY BEFORE MY MOTHERS
FUNERAL MY COUSIN I AM REALLY CLOSE TO HAD A MASSIVE HEART ATTACT AT THE AGE
OF 42, WITH MASSIVE DAMAGE TO HER HEART AND LUNGS. SHE IS NOW BEING
DIAGNOSED FOR A HEART AND LUNG TRANSPLANT.
ANY WAY, THINGS JUST KEEP GOING FROM BAD TO WORSE WITH MY FAMILY AND MY
CONTINUING HEALTH PROBLEMS. UNLIKE YOU I DO NOT HAVE THE PROBLEM OF BEING
UNDER WEIGHT, BUT INSTEAD I HAVE THE PROBLEM OF GAINING AND NOW IT IS VERY
HARD TO LOSE EVEN A POUND, SINCE I CAN NOT DO THE RIGHT WALKING EXERCISE TO
LOSE THE WEIGHT I AM NOW AT 5'9" AND WEIGH 238LBS. I AM REALLY FRUSTRATED.
IT SEEMS EVERYTHING I DO FROM CUTTING DOWN ON MY FOOD INTAKE AND GETTING WHAT
EXERCISE I AM ABLE TO ENDURE, MY WEIGHT JUST KEEPS GOING UP.
I HAVE MANY HEALTH PROBLEMS. THEY ARE EROSIVE ESOPHAGEAL ACID REFLUX
DISEASE, PEPTIC ULCERS, ENLARGED HIETAL HERNIA, HIGH BLOOD PRESSURE,
IRRITABLE BOWEL SYNDROME WITH CHRONIC DIRRHEA, A BIRTH DEFECT IN MY LOWER
BACK AND NOW COPD.
NEEDLESS TO SAY I AM VERY DEPRESSED FROM ALL OF THE HEALTH PROBLEMS AND
NOW TO BE DIAGNOSED WITH MODERATE TO SEVERE COPD, IT IS JUST ANOTHER BATTLE I
HAVE TO FIGHT ALONG WITH ALL THE MANY OTHER BATTLES.
I TAKE AROUND 15 T0 18 PILLS A DAY. ALONG WITH 4 NEBULIZER TREATMENTS,
FLOVENT INHALER 3 TIMES A DAY, SEREVENT INHALER 2 TIMES A DAY AND COMBIVENT
AS OFTEN AS I NEED IT. I AM JUST A WALKING PHARMACY. COULD OPEN UP MY OWN
PHARMACY WITH ALL THE MEDS I HAVE AT HOME.
I AM IN COUNCILING AND HAVE BEEN SO FOR ABOUT 2 YEARS NOW OFF AND ON. I
HAVE GROUP ON WEDNESDAY FOR 2 HOURS FOR DISABLED PEOPLE AND THEN ONE ON ONE
COUNCILING ONCE A WEEK.
IT TAKES ME NEARLY ALL DAY TO SWEEP, DUST AND CLEAN MY HOUSE AND
BATHROOMS AND KITCHEN, AS I HAVE TO STOP AND REST ABOUT EVERY 15 MINUTES,
THEN THERE ARE DAYS I CAN'T DO MUCH OF ANYTHING FOR LACK OF SLEEP AND VERY
FATIGUED MOST OF THE TIME. EVERY ONCE IN A WHILE I DO HAVE A GOOD DAY AND
WHEN I DO THAT IS WHEN I GO DO ERRANDS AND GROCERY SHOPPING.
MOST OF MY DAYS ARE SPENT AT HOME ALONE, SINCE I AM NOT MARRIED WITH MY
2 DARLING SCHNAUZERS DUFFER AGE 6 AND MY BABY SHILOH WHO JUST TURNED 1 AND
WAS DIAGNOSED WITH A SEIZURE DISORDER WHICH HE TAKES 1 PILL A DAY AND THANK
GOD THE MEDICINE HAS STOPPED HIS SEIZURES. MY 2 BOYS ARE MY MAIN COMPANIONS
AND I DON'T KNOW WHAT I WOULD DO IF ANYTHING EVER HAPPENED TO EITHER ONE OF
THEM. THEY ARE WITH ME 24 HOURS A DAY, 7 DAYS A WEEK, 365 DAYS A YEAR. THEY
GIVE ME UNCONDITIONAL LOVE AND LOYALTY AND ARE OF GREAT COMFORT TO ME.
UNFORTUNATLEY I NEVER HAD ANY CHILDREN, BUT DUFFER AND SHILOH ARE MY CHILDREN.
ANYWAY, I JUST WANTED TO THANK YOU FOR SHARING YOUR EXPERIENCES, YOUR
BATTLES, LOSSES AND TRIUMPHS WITH THIS HORRIBLE DISEASE KNOWN AS COPD.
I JUST HOPE I AM AS STRONG AND BRAVE AS YOU HAVE BEEN AND STILL ARE WITH
YOUR FIGHT AGAINST THIS HORRIBLE COPD.
I KNOW THAT MY LIFE IS NEVER GOING TO BE THE SAME AGAIN, BUT BEING
RAISED A YOUNGBLOOD YOU ARE TAUGHT TO BE A FIGHTER AND NOT TO EVER GIVE UP.
BUT THERE ARE TIMES WHEN I WANT TO GIVE UP, BUT THEN I HEAR MY DADDY (WHO
DIED IN 1974) SAYING TO ME YOU ARE STRONG AND YOU CAN DO THIS AND WIN. ANY
WAY I'M GOING TO GIVE IT ONE HELL OF A TRY.
THANK YOU SO VERY MUCH FOR YOUR WEB SIGHT. IT GIVES ME AND OTHERS HOPE
THAT WE DO STILL HAVE, HOPEFULLY WITH HARD WORK AND THE GRACE OF GOD MANY
MORE YEARS ON THIS EARTH TO ENJOY OUR FRIENDS, FAMILY AND SO I CAN ENJOY MY
BOYS. MY LIFE MAY BE ALOT SLOWER NOW AND I WON'T BE ABLE TO KEEP UP WITH MY
FRIENDS, BUT I AM NOT GOING TO JUST GIVE UP WITH OUT A FIGHT. I WILL FIGHT
TILL MY DYING BREATH, BESIDES I HAVE TO TAKE CARE OF MY BOYS.
I SINCERELY HOPE AND PRAY THAT YOU WILL CONTINUE TO FIGHT AND WIN OVER
THIS AWFUL DISEASE. MY PRAYERS ARE WITH YOU AND I WISH I HAD BEEN AS LUCKY
AS YOU TO HAVE FOUND SOMEONE AS WONDERFUL AS YOUR DONALD.
MAY GOD BE WITH YOU AND BLESS YOU MANY MANY MORE WONDERFUL YEARS WITH
THANK YOU AGAIN FOR SHARING YOUR BATTLES WITH THIS DISEASE.
SARA JANE YOUNGBLOOD
Just something to think about
If you woke up this morning with more health than illness...you are more blessed than the million who will not survive this week.
If you have never experienced the danger of battle, the loneliness of
imprisonment, the agony of torture,
or the pangs of starvation...you are ahead of 500 million people in the world.
If you can attend a church meeting without fear of harassment, arrest,
torture, or death...you are more
blessed than three billion people in the world.
If you have food in the refrigerator, clothes onyour back, a roof overhead
and a place to sleep...you are richer
than 75% of this world.
If you have money in the bank, in your wallet, and spare change
in a dish some place, you are among the top
8% of the world's wealthy.
If your parents are still alive and still married...you are very rare, even in the United States.
If you hold up your head with a smile on your face and are truly
thankful...you are blessed because the
majority can, but most do not.
If you can read this message, you just received a double blessing in that someone was thinking of you, and you are more blessed than over two billion people in the world that cannot read at all.
Have a good day, count your blessings, and pass this along to remind
others how fortunate we all are.
Date: Sat, 30 Sep 2000 16:00:23 -0600
From: Storm <stormcloud@USWEST.NET>
I see the postings on smokers and non smokers and one disease versus another disease and I can't help but feel the hurt and suffering that so many of us go through daily. The question, why me? The loneliness that we all feel. I hear the cry of why aren't there enough donors to go around so that my friends don't have to die, so that I don't have to die?
I don't feel that it is selfish to want to live, nor is it wrong to cry out in anguish and hurt, to the only people who really understand your cry, your hurt. We live in a time of non-caring. At time when " I can drop a quarter in the blind mans can but I cannot stop to hear his story". We are all out of the real mainstream of life and our "friends" have gone on without us. We are told to wait and hold to a hope that is so tenuous that we are afraid that if we blink at the wrong moment all will be lost. If we can find someone to hear our story we pour it out like water cascading down a waterfall, only to find when we are done with the telling, the listener got lost along the way and never really understood what we were saying. Sometimes even we do not hear our friends cry correctly, and take it for an insult rather than a cry of anguish.
I hear your cries my friends and so does our God. May he hold each of you in his hand this day and bring you peace and comfort He knows how true your heart is and judges not your anguish badly. Storm
Wednesday October 18, 2000
JUST DO WHAT YOU KNOW!
News commentator Paul Harvey (February 9, 1981) related a story which
took place during the Carter administration. Evidently, daughter Amy Carter
needed help with homework. It was Friday and the
assignment, a question about the Industrial Revolution, was due on Monday. Neither Amy nor her
mother quite understood the question, so mother Rosalyn asked a White House aide to run the question
by the Labor Department.
Sunday afternoon a truck pulled up at the White House loaded with a computer printout. Someone
assumed the president needed the information urgently, so the Labor Department assigned a team to
work all weekend to prepare the documents.
When Rosalyn learned that the research had cost hundreds of thousands of taxpayer dollars she was
horrified! But Amy went ahead and used the information to complete her homework.
On that homework assignment, by the way, Amy got a "C." (Does that say something about the quality
of information they gathered?)
I see a parable here. You and I also possess a "truckload" of information. We have spent a lifetime
gathering data about even the smallest aspects of our lives. But, in the end, it's what we DO with all of
that information that matters.
My own life can improve significantly if I simply take what I already know and APPLY it. I know how
to forgive, for example, yet I am slow to do it. I know how to love, when to be patient and how to share generously. But I don't always do these things.
Most of the time I even know how to be happy. I bet that you do, too. And I also know that if I habitually
do those things which I know will bring happiness, I will not be disappointed.
I believe most of us know what to do; we simply have to do what we know! A full and happy life does
not result from merely getting more information. It is a product of daily application!
Patsy Ruff died yesterday at the age of 56. Patsy was transplanted
(Lung) in April of 87 by Dr Joel Cooper in Toronto Canada, she was about
43 at that time, she was most likely one of the oldest survivors of a double
lung transplant. Patsy had no insurance, and raised all her monies in the
Walmart parking lots here in our city of Montgomery AL. Her declining health
in the past 3 years was not noticable, she continued to breathe really
well. But her kidneys began to fail 3 years ago,and she was on the kidney machine 3 times a week which made
her very ill. On our news last night, we learned of her death. She was on Dr Coopers first 6 double lung transplants, two of those six were alphas, one living in Texas died about two years ago, and the other is
still living. These were the heroes, they went where no had really ever gone before, prior to transplant,
Patsy had daily pulmonary rehab and when she left for Toranto a friend went with her to be with her during
the wait, and that wait was not very long, the morning after her transplant, her doctor from here in
Montgomery was at her bedside, thrilled that she had come through so good, off the vent, the next day
our TV coverage of her walking the halls of the hospital there was a wonderful site, Patsy worked for The American Lung Association for almost 9 years, and talked to folks who were considering a transplant no
matter where they lived, she was a wonderful speaker, who spent these years, in high schools telling the
kids not to smoke, when she told her story, she would get to one point, in the story, and always had to
stop, as a lump came in her throat and she had to wait a minute to continue, but she finished her
story with a smile, and gave all the miracles to God, she was a very strong believe in God. When Barnes
reached there 100th lung transplant she was there for the celebration. She played the piano at her church.
First of all Sandy is coming home tomorrow, the case worker has arranged
for a visiting nurse to come home to access him and to make any arrangements
needed. A hospital bed and a walker will also be delivered home tommorrow.
He is in good spirits and looking forward to leaving this despicable place
and coming home to my home cooking.
Well the big day arrived. I went down to the administrators office and was warm heartedly greeted by his secretary who showed me into a waiting room where I waited something like 5 seconds and in he came. He led
me into his office and sat me down at a huge boardroom like table, the patients advocate was sitting there with him like his bodyguard. I handed him my letter and asked him( very nicely ) to read it. Once read he said '' Where do you want to go from here? '' I was dumbfounded. I replied that I had no intention of sueing the
hospital or anything of that kind, but I wanted the assurance that if my husband was ever admitted here again that all that I had written would never and I repeat never happen again. I added that I thought my husband would never be coming here again anyway. He asked if that mean't that he would be going to another hospital
and I replied no, he will probably die. (I only said that to be real nasty) It's the nearest hospital and under the circumstances the safest place to go. He was very nice and said that things of this nature do happen as isolated cases, but that it was understandable my aggravation with so many of them. He turned to the patients advocate and said that a red flag must be placed on Mr Adler's medical sheet so that when/if he was admitted again
nothing like this would happen. He also told me that if anything ever happens again I should immediatelycontact the patients advocate and she would organise everything. I was satisfied with what he said, and thanked him
and was about to leave. But I couldn't resist one more thing. So I told him that on the night Sandy was admitted to the hospital, I had cut myself badly in the morning, but as I had no health insurance I had not gone to the ER, but after arriving there and stabilising my Sandy his doctor had seen the blood on my hand seeping through the bandage and had insisted on looking at it and convinced me to have 4 stitches and a shot. Three days later I received a bill for $750 , he immediately turned to the P.Advocate and said we can take care of that bill. Thats is the moment I nearly blew my top. I said just a moment I want to tell you the whole story. When i got the bill I called the hospital to tell them that I thought that was an exhorbitant price to pay for 10 mins attention I had, 1 hour later I got a phone call to say they had knocked off $300 from the bill. He turned to the patients advocate and asked what had happened and she replied there was a mistake made and they had charged me twice.
He repeated that they would take care of the bill. I shaked his hand and thanked him and left.
I then went home and started calling our 02 supplier to arrange for the hospital bed to be delivered to my house before Sandy is discharged tomorrow morning. Another saga. the 02 supplier said that they had no orders for it, they called the doctors office and were told that the hospital would have to give the order. So I called the hospital and asked to talk to the Patients advocate, I got her voice mail left message and 10 mins went by no returncallled the operator again and said I wanted her paged and I would wait, they tried again to get me to hang up, but no way. I stuck to my guns and said I have already spoken to the hospital administrator this morning about other problems and was told to contact her immediately if any problems occured. I was passed to the supervisor, who paged her again. She answered the phone and said she would deal with it. Meantime I called our HMO who had already authorised the home nurse but no bed. She called back and said that the case manager had gone home who was dealing with it. I told her she either organised something immediately, or I would get in my car and be back in the Adminsitrator office in 10 minutes. I then called the Drs office and spoke directly to our Doctor who assued me that he had spoken to Linare (02 supplier) 20 minutes ago and that bed had been arranged.
So to all you lovely people out there, if you ever have any problems in the hospital or anywhere
else come to think of it, go to the top man/women, and insist you don't want to see any middleman/woman.
My Sandy has had excellent care from then on and will continue to do so otherwise they will be hearing from me again. My only regret that I didn't do this years ago when it all started. I bet there are many caregivers out there who might one day be in similar position and I hope this will help them.
Thank you to all my friends who supported so well the other night. I'll be back soon
Love Jen xxx
Thursday October 26, 2000
Well, I don't really know where to begin as so much has happened. First I want to really thank all who
wrote and wished me well and said they would pray for me. I very much thank you all as they have lifted
my spirits in a much depressed time in my life. I will be off-line for awhile as I need to recoop.
So I will just spit out events as they happened (as best as I can remember)
Late yesterday I came home from the hospital after being there since noon on Sunday.
During all that time I was on IV's and a liguid diet and mass antibiotics.
Diverticulosis is not a fun experience. Every bowel movement brings on a toxic shock happening followed
by cold chills and tremors. If you think COPD zaps your energy add to it another disease that further
depletes your energy. I now am allowed to eat and no longer on my liquid diet. But, only certain foods
equal to stage one baby foods. And only certain fruits and vegetables and meats.
The diet is depressing and unfulfilling in more than one way. With the exaustion of it all, I fell asleep on
the couch last night to be close to Ms. Boo who had missed me terriblely while I was gone, according to Don.
I had also missed her a lot. We fell asleep with her on the floor by the side of the couch.
I woke up around 7:30 this morning to the smell of doggie poop. I looked down at the floor by the side of
the couch and Ms. Boo was loosing all body fluids.
She passed away a little after 8 this morning and I am sure that if
Don and I had not been so concerned
about my health this past week, we should have seen some new signs. We knew it was going to come as
she was almost 16 years old.
I think that she did wait until I came home from the hospital to die. She must have wanted me with her.
She will be dearly missed as she has been a wonderful companion, friend, and nurse.
I feel blessed to have been loved and cared for by her for the brief span of time we had together.
In my heart I still see fields of wildflowers with a little white pup frolicking with the joy of living.
Good bye My sweet Ms. Boo Gwynne, untill we meet again.
For quite a while now I have been wondering if some of us also deteriorate
'differently' from the
disease of COPD. I am not talking here of rate or progression of deterioration of this disease.
That is a given. I am talking deterioration of other organs besides lungs, that are associated with
having COPD. I know some suffer oxygen deprivation and some have short term memory
loss. This is at the beginning of a real problem here for me. How about those thin skinned bruised
areas. The skin is an organ. No I do not, will not, never have taken prednisone. Yet there are
those ugly purple spotches on that ugly wrinkled skin. I have kidney problems. I now have
digestive and Bowel problems. I have always eaten if not enough, at least well and healthy.
I always had better than 20/20 vision. I mean at one time I could spot a yard sale sign from a
car moving at 55 mph from several blocks away. (In time to slow down and stop to check it out)
Now I use thick glasses and sometimes plus a magnifying glass. And of course there is always the
heart. Because we do not move oxygen efficiently through our blood to feed our muscles, the
heart (a muscle) works overtime and harder to do it's job and help us breath. Bringing on
perhaps stroke or heart attack long before we expire from COPD. What I am trying to say
here is: It isn't just the lungs or lung volume usage that is deteriorating (at different levels for
each of us) It also is other bodily organs.
I have no medical facts to back up this statement. I do on the other hand have evidence of this
by living in the deteriorating body. It is like living on a sliding board. You slide down another time
and hit the ground. You pick yourself up and go around to the stairs and try to climb back to your
former self, never knowing when the next slide will occur. I have never heard a doctor speak on this.
In fact I don't remember any doctor saying too much about any aspects of what to expect about this
disease. I have learned a heck of a lot by living it, though. How many of you have had thoughts
along this line. Let's have some discussion on this please.But, I'm only 59 and what I'm experiencing
and inquiring about is a non-age related issue, I believe, (unless of course, you are an advanced age.)
Now genetics does play a big part in who deteriorates at what rate of speed. My deterioration is so
severe that often (NOT SOMETIMES) when Don and I are out together we get mistaken for mother
and son. (So, I don't like to go out often, anymore.)
I know some have other organs besides lungs breaking down and they are doing so at different rates.
Therein lies the reason for my request for discussion.
If you have some thoughts on this, please write to me here < email@example.com>
"Like the sunshine touches the rose, You have touched me, and I have grown."
Your friend in Pa.
Well, I promised you a report on this hospital stay. So, here
it is. I entered ER shortly after noon of last
Sunday. They did blood work, stuck in IV and heart monitors and blood ox monitor. By 7 o'clock they told
me no solid food and they wanted to admit me and monitor me for several days on a liquid diet and with blood work every 6 hours. Since my doctor for this is a gastro-intestinal doctor and new to me he did not know all
my pulmonary needs. I told him the only way I would stay was if I got to keep my own ultrasonic nebulizer
with me, and I got put in a private room where no one else's pefumes, lotions, etc. or their guest would bother me. I have (MCS) Multiple Chemical Sensitivityas another weight around y neck. The room also needed a
fan to circulate the air for me. I need air to be moving in the room I am in. I also need a cot or sleeping chair where my husband could stay there with me. He said he would see what he could do. Of course after this
little visit he moved on in his work routine, and wasn't around to verify a darn thing. Around 8:30 they finely found me a room. They rolled me up to the third floor from ground floor ER. As we came into the room I saw
it was already occupied with another patient/room mate. I told the aide to roll me back to the emergency room as I was not staying. She did so, and ER got all upset and told me they would keep looking and find me a room. And for me not to leave. Took them about an hour and I had my room with a nice padded chair that made into a bed for Don. They even brought in a bi-pap machine for me. The pharmacy never brought up any of my
regular pulmonary meds the entire time I was in the hospital. Fortunately I had my 7 day pill keeper in my purse. I just kept my mouth shut and took my meds as needed.
Next day Respiratory Therapy Department came in to give me a Neb. treatment and wanted to know what
neb schedule I was on. I told them I was on a as needed basis. Sometimes twice a day. Sometimes 8 times a
day. Or more often even on some days. She said they could come back every hour if I wanted but, I could not keep my ultra-sonic in my room and treat myself. (who do they think does it at home?)
Well, I don't even argue anymore cause, it hurts me and makes me loose energy to get stressed. And they
don't even think about what it is doing to you. They don't have any idea in God's green world what it really is like to be a pulmonary patient. What the hell are they doing working as a Respiratory Therapist in the first place?
To really be efficent as a RT it seems to me you have to walk first in your patients shoes. How else can you know what life is like for them? BUMMER!!!!
I just told her fine. I'm going home cause, I will have my neb with me always and if not here, then at home is
fine with me. She just looked at me with her gaping mouth with nothing to say after that.
After she left Don said, "What now?" I just said we "wait and see"
A couple of hours later My pulmonary doctor, who is head of Pulmonary dept. at this hospital, and the RT come in. He says "What's the problem?" I say "I have no problem, I'm just going to use my neb in this room, when I want it, and I am not going to wait to get it, or I'm going home" He turns to the RT and says "I don't have a problem with that, Do you?" She starts to say something but, doesn't. He then says to her "That's all then" as
he dismisses her.
He then asked me if everything else was all right. I told him "Well, now that you mention it, Hell no, everything
is not allright. Every time I have to come to this hospital, I go through this routine and about a single room.
It is stressful to say the least. Could you just ok it in my hospital computer records. Because of my MCS that
I require a single room,So it doesn't happen again."
He says "Good Idea." He agrees and says he is keeping staff waiting and to hurry and get better.
I was also on mass doses of two anti-biotics by IV while there, and pharmacy missed
sending up two of them (the nurses say) Anyway that was one of the deciding factors by my GI doctor,
for me to come home and continue taking my mass anti-biotics by mouth. At least I would be assured of getting them. I will not go in a hospital and stay anymore without someone I know in there with me.
Please everyone, stay on top of all treatment you are suppose to receive in a hospital.
You also (I now find) can get what you need in a hospital setting, within reason by pre arrangement with your doctor, prior to hospitalization. AND A CARING LOVED ONE WITH YOU KEEPING UP WITH YOUR TREATMENT. I write this in just Knowing that information given will help eliminate undue stress in others.
I would like to state that I do not feel this is an isolated incident
at this hospital. Due to dwnsizing and cost cuts
and less professionals and more hourly workers on board. The quality of care has declined drastically.
Please everyone Guard your Health like it was Gold.
In reality it is much more valuable and much harder to protect. (ALL THINGS CONSIDERED)
Well, here is my answer.
First of all we know that we are all different. Every part of
us is different. Even to how we think and compile
our data to make our decisions. Well, Olivija has always thought her own way and done things her own way.
But in all fairness I have to say I act on my data after I have gathered from many sources and given each source
it's proper consideration. Then I disregard some information and I keep some. According to my own logic. We all
have our own 'different' logic meters we opperate from. This is how I came to my conclusion about predisone.
I have known friends and relatives in the past, who have used it for diseases they had and they did not improve,
they had more complications occur. They just kept having more and more go wrong. That was all long ago when I
was a young woman. I just put it out of my mind since I was at that time young, healthy and endestructive.
Then when I got COPD I had a pulmonary doctor suggest it to me when I was complaining of shortness of breath
at a office visit. I declined it because of what I remembered from my friends in the past. In the following years
I continued to refuse it, even though I used the nebulizer more than I should at such 'short of breath times.
Some of my tools for survival are to just sit down and close my eyes and relax completely. Slowing the fingers
down. Then I slow the hand down, then the arm, the feet, the leg, the tummy muscles, the chest, the heart, the
neck the face, the mind. I am busy with my mind slowing down the works so that I will not focus on being short
of breath. I try to concentrate at that point on just one item. What I think of is a nice set of PINK LUNGS.
You might want to think of anything that is peaceful to you.
It probably will surprise you all to know that I do not take any anxiety, or depression pills either.
I have tried those on several occasions. But, in the long run I have found that vitamin B-12
the stress vitamin works for me. Remember we are all different. I am only relating here what works for me.
I also have faith in a higher power. I use all this to pull me through. I do ask my God for a lot of help when I
become overwhelmed with it all. Fortunately I know he will always be there for all of us. And never moreso then
at the final hour when we close the door to live as we know it on this plane. We then will open a door to a new life
that will not have you and I entrapped in these disease-ridden bodies with the useless dried up old lungs.
I know not what great joys await me in the next world, but I do know it will be without the entrapments
of this body.
The prednisone I decided in February or 1995 for sure that I would never take again. Yes I took it then. It was
when I had my LVRS. I was in a drugged state and they took advantage of me and gave me prednisone when
I was stoned and happy. I didn't know what I was doing, I just gobbled them up. Well it was only 10 mg I think.
But it took a month to get off it. It was hell for me. I also feel because of all I have read about them that if
you never take it, YOU WILL find some way to recover from the short of breath happening of the moment.
The more you take it the more short of breath episodes you will have in the future. People who are taking it
should read and educate themselves as to what they are doing to themselves. I know there are those out there
that have to take it because of immuno-suppressant reasons, and so far there is nothing else available.
And then there are others that feel they just can't make it without prednisone. That's fine. That's OK.
I just would like to see that you really do know the consequences for taking it before you develop complications,
or a new disease down the road. Prednisone, any way you slice it, is a trade off. You have to educate yourself
to even know if it is worth the trade for you.
"Check it out before you give it the chance to take you out"
A STORY OF FOUR WIVES !
Once upon a time...there was a rich King who had four wives. He
loved the fourth wife the most and adorned her
with rich robes and treated her to the finest of delicacies. He gave her nothing but the best.
He also loved the third wife very much, and he was always showing her
off to neighboring kingdoms. However, he feared
that one day she would leave him for another.
He also loved his second wife. She was his confidante and was always
kind, considerate, and patient with him. Whenever
the King faced a problem, he could confide in her to help him get through the difficult times.
The King's first wife was a very loyal partner and had made great contributions
in maintaining his wealth and kingdom.
However, he did not love the first wife and although she loved him deeply, he hardly took notice of her.
One day, the King fell ill, and he knew his time was short. He
thought of his luxurious life and pondered, "I now have
four wives with me, but when I die, I'll be all alone. Thus, he asked the fourth wife, "I have loved you the most,
endowed you with the finest clothing, and showered great care over you. Now that I'm dying, will you follow me and
keep me company?" "Absolutely not!" replied the fourth wife, and she walked away without another word. Her
answer cut like a sharp knife right into his heart.
The sad King then asked the third wife, "I have loved you all my life.
Now that I'm dying, will you follow me and keep me company?"
"No," replied the third wife. "Life is too good! When you die, I'm going to remarry!" His heart sank and turned cold.
He then asked the second wife, "I have always turned to you for help,
and you've always been there for me. When I die, will you follow
me and keep me company?" "I'm sorry, I can't help you out this time," replied the second wife. "At the very most, I can only send you to
your grave." Her answer came like a bolt of thunder, and the King was devastated.
Then a voice called out. "I'll leave with you and follow you no matter
where you go." The King looked up, and there was his first wife.
She was so sad and thin, she looked half-starved. Greatly grieved, the King said, "I should have taken much better care of you when I had
In truth, we all have four wives in our lives: Our fourth wife is our
body. No matter how much time and effort we lavish in making it look
good, it'll leave us when we die.
Our third wife is our possessions, status, and wealth. When we die, it will all go to others.
Our second wife is our family and friends. No matter how much they have
been there for us, the furthest they can stay by us is up to
And our first wife is our soul, often neglected in pursuit of wealth,
power, and pleasures of the ego. However, our soul is the only thing
that will follow us wherever we go. So cultivate, strengthen, and cherish it now! It IS your greatest gift to offer the world.
About Thanksgiving !
Be Thankful This Holiday Season
If you have food in the refrigerator, clothes on your back, a roof overhead
and a place to sleep, you are richer than 75% of this world.
If you have money in the bank, in your wallet, and spare change in a
someplace, you are among the top 8% of the world's wealthy.
If you woke up this morning with more health than illness, you are more
blessed than the million who will not survive this week.
If you have never experienced the danger of battle, the loneliness of
imprisonment, the agony of torture,
or the pangs of starvation, you are ahead of 500 million people in the world.
If you can attend a church meeting without fear of harassment, arrest,
torture, or death, you are more blessed than three billion people in the world.
If your parents are still alive and still married, you are very rare, even in the United States.
If you hold your head up with a smile on your face and are truly thankful,
you are blessed because the majority can, but most do not.
If you can hold someone's hand, hug them or even touch them on the shoulder,
you are blessed because you can offer healing touch.
If you can read this message, you just received a double blessing in
that someone was thinking of you, and furthermore
you are more blessed than over two billion people in the world that cannot read at all.
Please count your blessings and have a happy holiday season!
Born 4-3-34 in San Antonio Texas, Virgie
smoked for 40 years , she was
dianosed in 1-2-98 with COPD an quite smoking on 3-3-98.
There were times when I wondered if I would make it to today; 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. To make me who I am Today.
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. Today, none of
these miraculous creations will escape my notice, or my thanks.
Today, I will share my excitement for life with other people. I'll make
someone smile. I'll go out of my way to perform a random act
of kindness for someone I don't even know. (YET!)
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 mean 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.
Tonight, before I go to bed, I'll go outside and 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. ( Well maybe I'll just look out the window, instead of going out in the cold)
As the day ends and I lay my head down on my pillow, I will thank the
Almighty 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!
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