If you want to go somewhere, ask the person who has been there.

"I try to keep an open mind, but not so open that my brains fall out."

The Continuing saga of the
"FUTURE CORPSE"
1999

One of my friends said it right when he said
"Putting a smoking section in a Business
is like putting a peeing section in a swimming pool."
 

Bill Poplett, Claude Baril, Richard Heering and Paul Marks

Claude's Home Page
More on Claude
Claude is missed

Pain is a requirement. Suffering is optional.

"Don't Complain About Thorns Among Roses; Be Grateful For Roses Among Thorns."
Here it is already
Tuesday, January 12, 1999 already.
I really did not want to wait this long before starting this page but I have had a lot going on in my life.
Mostly two little grandsons to do homework and reader rabbit on the computer with.  I have shown the boys how to do a web page and you can visit it at:DAEVID AND IAN WEB PAGE
I also have been doing a lot of work on learning coral draw and new scanner stuff.  The Christmas and New Year Holidays were fun with the boys here with my daughter and her husband.
We have had a good bit of snow and we live on the north side of a slope and boy have everyone been doing some sledding. (except me.)  I have enjoyed so much watching and participating in their development.
They are such a joy and a blessing to me.
About my lung transplant news.  Got a call last friday to come in on the 19th of jan for my treadmill
destat test.  And then again on the 21st to talk to the doctor in charge of my case.  I still am in an evaluation process of the entire situation.  Everyone tells me that they are interested and that I probably am already in if they are asking me to come back for that one last test.  That is sort of my thinking also.
I also have been having a go around with the phone company. There is an intermittent problem in the cable to my phone line.  If it gets cold and wet i get no dial tone.  Well this is the phone to my computer and It has taken me almost a week and lots of stress to explain to them what a crook this is to live with.
Last and certainly not least is the fact that Donald is having some health problems, and I am concerned.   We are
afraid it might be connected to the lyme disease he got a couple of years ago.   He has a very fast pulse rate . it races
and this is not very good.  I am very concerned as Donald is ....well there just are no words to describe what he means
to me.  If there were words, just speaking them would diminish the feeling that I have for him.
And my Life goes on with lots (for now) to fill up the days.
"If we knew what it was we were doing, it would not be called
research, would it?" -- Albert Einstein (1879-1955)

Friday, January 22, 1999
I found out yesterday at my HUP appointment with Dr. Arcasory, the doctor assigned to my case that I
have been accepted for lung transplant at University hospital in Philadelphia.  At this time the average wait is
about 18 to 24 months.  I am checking into now finding a pulmonary rehab program for myself.  I do not know
where that would be.  maybe Taylor hospital. By monday I Plan on checking out a few by phone and setting
up a time to go visit them and see where I want to do rehab.  i still have so much mixed feelings about transplant.
It is such a drastic step. 10% are lost in first month. 25% are lost in the first 6 months.  Over 50% are lost
in the next five years.  Another harrowing thought is the killing your immune system so it won't reject the new lung.
Has to be done but, you also won't be able in the future to fight off infections on your own.  You will be susceptible
to any and every germ there is. and then there is tissue match, not just blood match.  and different other matches.

You better make sure you have had every germ your donor has had because there is always the chance they have
had a viral infection you have never had.  their lung has built in immunities to it that you don't have, but it
has been introduced into your body and you no longer have immune system to fight it.  By the time doctors discover
there is a problem, it is to late. The damage is done and you are a goner.  There I go again,  playing out worse case
scenarios.  Always trying to cover all bases, and in this case not really knowing what to do.  I am going to find
the right rehab center for me to do rehab at.  Then I will just take it as it comes one day at a time.  I really don't want
this tx. I will do it I think only as a last resort.  It is such an invasive, final statement. Anyway this is how I feel today.
Tomorrow is always another day.  Who knows how I will feel tomorrow.
there is no reality in life--only different people's perspective on how they view life.

Saturday, January 30, 1999
Two days ago on Thursday I went to visit Taylor Hospital's Pulmonary Rehab Center to see if that was where
I wanted to do my Rehab that was ordered by Lung transplant Team at HUP.  I was really impressed at all
they have to offer.  It is on the fourth floor of the hospital and is in a large spacious area with large
beautiful plants all around and large windows to look over the countryside as you exercise, which provides
a very tranquil environment.  The pulmonary therapist is a warm friendly person and willing to work with you
on your need basis.  I start this Tuesday at 10:00 AM.  Sessions are 2 hours long and one hour is physical work
out and the other is in education with speaker or some form of learning to care for ourselves easier.
I have never seen a rehab this nice before that was not dedicated to "Sports Medicine."  Taylor Hospital
will get some recommendations and whatever I can do to promote it, if indeed it does live up to what I have seen
so far.  I am now working on getting a list of possible meds that could be given pre-tx. and post-tx.
So the table below will not get filled immediately.  It will fill up as I learn Piece-mill what all these drugs could be.
KEY WORD HERE IS "COULD BE ANY COMBINATION OF" THESE DRUGS
"DON'T FORGET TO LIVE"  Words to live by.  We must stop and enjoy life.
Your specific disease has a lot to do with your pre-tx meds.  Post tx you will take a variety of meds, most
to suppress your immune system.  Some to help prevent viruses and fungi from attacking your body.
 Often, you will need to take supplements to offset the side effects of your post tx meds.  The bottom line
is that you will be taking powerful drugs for the rest of your life.  The specifics depend on your situation,
and how your doctors handle your treatment. Below are some of the many drugs you could be giver prior
to or after transplant. Dosages vary from person to person.

Do you have a medical question or want to know about one of these drugs?

I Was Dying.....

First I was just dying to start school with the other kids in the neighborhood.
And then I was dying to finish high school and start college.
And then I was dying to finish college and start working.
And then I was dying to marry and have children.
And then I was dying for my children to grow old enough for school
so I could go back to work.
And then I was dying to retire.
And now, I am just dying
... and suddenly I realized I forgot to live.

 " "Lord, remind me how brief my time on earth will be.
Remind me that my days are numbered,
and that my life is fleeing away.
My life is no longer than the width of my hand.
An entire lifetime is just a moment to you;
human existence is but a breath." "

"A Well Chosen Word Can Speak Volumes"

Thursday, February 11, 1999
These are not my words, they are the words of a virtual friend who shares with me the same disease.
These are her feelings and I know you will feel what she is feeling as she writes them.  I sure did......
...............................................................................................
My 2 cents..for what its worth...This last year I have lost a lot of my
independence. I was hauling my 02 all over and running errands, shopping,
even riding with the portable 02 in my husbands saddlebag on his Harley.
It wasn't a great life but I had come to accept my limitations. If it
continued that way maybe I would have had second thoughts about the lung
transplant....but then reality set in, I got sick. Nasty infection that
would not go away. Now, six months later I am infection free but the trade
off is my independance. No more slinging my 02 over my shoulder and
hopping in my car to run to the store. Its become too difficult to fix
dinner and I am relieved when my daughter says.."You don't have to pack me
a lunch today Mom". I took the first shower I have had in 3 months
yesterday...heaven. I suppose again I could learn how to ajust to relying
on others more...but there are no others..or very few. My Moms dead, my
Dads 76 and needs me! My husband is a workaholic and very stressed. My
friends are busy with lives of their own. I am not wealthy enough to buy
care, nor do I want to. I dread becoming more and more of a burden to my
family and hope I am making the right decision to go ahead and try to gain
some quality...because I am living the quanity and its not enough.
Love,
Suzie
*****************************
Somewhere on a desert highway
She rides a Harley-Davidson
Her long blonde hair flyin' in the wind
She's been runnin' half her life
The chrome and steel she rides
Collidin' with the very air she breathes
The air she breathes

Neil Young-1992
...............................................................................................
The Diference between construction and creation is exactly this: A thing constructed can only be loved
after it is constructed; but a thing created is loved before it exists. ................................Charles Dickens
(Creative Thoughts are deeds)
Saturday, February 13, 1999
Well I was only able to do 6 minutes today on the treadmill set at 1. Thursday at rehab I
did 10 minutes at 1 plus all the other exercises.  I guess today was a bad day.  Yesterday
my new friend Millie came over.  She is 69 years old and drives and carries her oxygen around with
her.  I met her at rehab and she is so afraid of being alone that she will drive herself anywhere to
not be alone. This disease takes so much from us, not just physically, but also emotionally and
psychologically.  It is absolutely impossible to describe what you have been robed of by
COPD/Emphysema to a person who doesn't even think about where their next breath is coming
from.  The damn disease takes over all aspects of your life whether you want it too or not.
Try to picture any of these scenarios:
1.  You are in the bleachers at a football game and your team has the ball and is running toward
the goal post and you want to jump and cheer along with your friends.  You don't want to think about
COPD/Emphysema. You wanna cheer and yell your team on.  Too damn bad.  How you gonna do that
when you can't even breath.  You are worried about what happens when you get excited........
2.  It is summertime and it sure would be nice to go swimming or water skiing or just hang out in the
sun near the water.  Can't handle the heat.  Have to have air circulating around you all the time.
3.  You would like to go to church on Sunday morning.  Or maybe to other places where crowds are,
but you have to be careful of crowds because you know crowds are full of people with colds, flues
and lots, lots worse.  You've already been in the hospital twice this year with infections and it is
only August.  Do you really want to risk it? Would the outing be worth it in the long run?
4.  You use to enjoy so much eating out with your husband. But you have this memory in your head of the last visit to the hospital that almost wiped you out.  You got some bacterial infection from the
way the food at the restaurant was handled. You spent 5 days in the hospital and came home with a
vast weight loss.  There is no way to forget the disease. Not for one minute of your day or your life.
It is not that you don't want to. It is that it is there to remind you sucking the breath and the life
out of you.
If you think the above mentioned things are miserable things to live with, I can name lots of other
things I miss out on that keep my mind on this disease.  Then when I do go out in public and see
someone smoking I try to catch their attention and look them in the eye.  I want them to see me.
I want them to remember me.  I am a 90 lb. wasted body who is 58 and to myself look lots older.
I usually am in a wheelchair with oxygen being pushed by husband or daughter.  If I get the chance I usually will even tell them to keep puffing away here's the preview of your coming attraction.
You think I care what they think now.  "NO WAY."  Maybe I even may make an impression to make them quit and save their life.
There is lots and lots of stuff I am missing. There is lots and lots of stuff my husband is missing
because of this disease because there is NOT the sex life there use to be.  Without Love this
marriage would not have survived.  I am thinking these thoughts tonight as my Wedding anniversary is tomorrow on Valentines day and I can not give my husband what he wants and needs in our
marriage.  If I could cry for anything it would be for all I have deprived my family of.  Such a wonderful family who goes out of their way to provide for my every want and need.
I know what I did to get Copd/Emphysema.  But, I don't have a clue what I ever did to deserve
such a wonderful husband and family.
>>>+>><>000============)0(=)0(============000<><<+<<<
Saturday, February 27, 1999
Boy, has February passed in a hurry.  My how the time flies when you are having fun.  I am enrolled in
a physical rehab program at Taylor Hospital here in Pa. and I go on Tue. and Thursday morning for
two hours each day.  One hour of maintenance and one hour of lectures or whatever they have planned for us. I am really enjoying it and need the physical part of it a lot. I do feel somewhat better since I have been going for about 4 weeks now.  I hope it is feasible that I can continue rehab after initial time is over.  Don is leaving for a trip for Boeing. He will be gone to Conn. for a week on business.  Renea
and the children and I will be alone here and I will dearly miss him and hope I can survive without him.
I suppose this is a test and I suppose I will survive.  I'm sure I will. I just sometimes have those COPD
anxieties kick in again and have to fight off the panic attacks.
I made a new friend at Physical Therapy.  Her name is Milly.  She doesn't go to therapy now.  The
therapist introduced us and now we see each other about once a week.  She comes and visits me or I go visit her.  She is in severe stages and is on oxygen.  She still drives, but, I have my doubts if she should be driving.
Her husband is a wonderful artist and is much known in this area.
The physical therapist at rehab also gave my name to another lady that I have began an email friendship with.
She lives within driving distance of me. So we may becoming close friends also.
Life goes on for me.  Some days are good, some are not so good.  Some days I am scared to death I am not going to see tomorrow.  But all days are wonderful as they are a gift to be enjoyed and I always try to enjoy
every day of my life.  Most of the way I do that is trying to create something new every day.  Some piece
of art work or something new on a web page or something to cheer someone up who is depressed or ill.  Or
doing something neat for my grandchildren, children or my husband or mother.  God has been so good to me and he keeps giving me more and more time to learn these lessons he has given me for soul growth.  I wish I wasn't so slow whited at times.  I do know the key word to the lesson is LOVE everyone as Christ LOVES us.
The secret is in the practice of that Ideal.
 I want to be like the bumblebee-it does not know that aerodynamically it cannot fly.
- So don't tell me I can't, either.

Saturday, March 27, 1999
Well, It isn't as if I have been having a wild party that had kept me from writting here for a while.  I have been busy with
pulmonary rehab. and I have had a broncial infection for about 3 weeks now that keeps me coughing all the time.  It is a productive
cough though.  It is just I do no usually cough at all.  I haven't coughed this much since I was diagnoised in 1986.  I hope it is
not a viral infection.  i have already taken one Z-pac and am now on my second one.  Seems to me that if it were a bacterial
infection it would already be gone.  It is not as bad as it was, but it still is bad.  I am doing good at rehab.  Not as well as I want
to be doing, but I know it will take a lot of work to just remain at this level.  I am up to 20 minutes at 1.2 on the treadmill.
I can pull 2 lbs. with my arms for 5 minutes. and I can bike with no tension for 15 minutes.  I know this must sound trivial to all you healthy people out there but for me it is an effort to get off the couch and walk down the hall to the bath room.  It is really funny to go to rehab in a wheelchair and get out of it to do all the exercises. I have done 6 weeks of exercise and I know that I will have to do it the rest of my life.
One of my new friends Milie is cming home from the hospital today and I hope to be able to go by her house and deliver her some flowers
before we go to Di and Bobby's for dinner tonight.  I think that is where I picked up my cough that I have. oh well.  I still need friends.
I have been contaplating Renea and the boys leaving and going back to Kentucky when this school year is over.
I am very scared of the time I will have on my hands then.  I will be alone and I do not like being alone. Just recentlyt have I been able to label this anxiety that I feel.  I kept asking myselfwhy do I get panicky when I am all alone for the day?  I never could identify the
reason until now.  It is like this....It takes forever for me to do anything. when I go to the bathroom.The first thing I do is sit down and get
my breath.  When I do anything the first thing I do is sit down and get my breath.  I move so slow because I can't breath.  My legs, arms eyes, mind work at the same pace, it is just my lungs that don't keep up and it affects all other aspects of my existance.  If an
emergency were to occur while I am alone that required fast, quick responce, I would not be able to handle the situation.  I can't respond fast enough to take care of an emergency. That scares me and thus the panic attacks.  This is just one more thing I live with.
I am a pretty creative person so I will have to think of some creative way out of this situation?
Maybe someone reading this might have a suggestion for me and could look at the bottom of this bage for my email address and email me their suggestion of what to do for my panic/fear.  I have thought of renting out a room in our home to some lady.  That might be neat.
But, you really have to be careful who you have in your home.  And I don't want anyone I have to take care of.  I would want
someone who would want to help out around here.  At the moment this seems the best idea. But, how do you find someone who is just the right someone?  Any ideas, anyone?
Well, that is about all that is going on for the moment. Oh yea my son-in-law left to go back to Kentucky a couple of weeks back as he got a call from FORD to come test for a job with them. He spent the past month testing and got hired and starts next month.  So he will be back here tonight or in the morning to stay until he goes to work there.  He will get to be with Renea and the boys as they miss daddy.
Then he will go back to Kentucky to work and Renea and the boys will join him when school is out here.
More later dudes and dudettes.
People who expect nothing, will never be disappointed.

Sunday April 11, 1999
Hello all. I am just about over my bout of what ever it was I got. Some bothersome infection that kept me coughing all the time ant I used up two Z-Packs and had to finish up with 8 days of 200 mg. of
Trovan.  The Z-Pack wasn't doing the job.  I guess I have built up a resistance to them.  My Friend
Millie that I made at rehab several months ago and who bought a computer and got all enthused about
having someone to communicate with and we had established a friendship.  Well she was in the hospital about a week, came home, fell and went back in the hospital and she can't remember things now and they have
Hospice with her and I expect the very worst and the family doesn't want others there.  I must call and
check on her in the morning.  It is getting closer to school being out and my daughter will be leaving with the boys and I will surely be very lonesome for her and my grandsons as they are going to join Daddy in Louisville,
ky.  I can feel already that I will have masive panic attacks.  Just don't know how I will handle it this time.
I thought I had this dragon already slain.  I guess that is what I get for thinking.  Don and I both are concerned about it.  It scares me that there has to be an answer for me if I only could find it.
Little Daevid My youngest grandson and angel will be 7 years old the 24th of this month and he and I are going to toys are us and he will get him some presents from grammy and grampy.  I really will miss you Renea.
You and My Sweet Grandsons.
I have another appointment on the 22 of this month at University Hospital of Philadelphia, pa.
I think they will probably check stats to see how I am doing in reguard to Pulmonary Rehab. that I have been going to.  I also have appointment for mamography and paps smear. so i'm doing what I should on getting
tested.  I am glad summer is here and I can plant stuff outside and enjoy the patio and fresh air and all
the plants.  My Website has turned into a monster and is difficult to maintain.  I still enjoy it and it is a delite to create and maintain.  Sometimes it just seems so big though.
Well I think I will close for now and clean up some other pages on this site, that haven't been looked at or cared for in a while. Everyone wait patiently for the next edition of my life. It may not be much to you  but, it's
all I have.
Do, or do not. There is no try - Live each day as if it were the last day of your life, because so far, it is.
Monday April 19,1999
Goal to work on for pulmonary rehab??????
(1) to walk for 20 min (and go at least 1/2 mile in that time and no rest stops),
(2) ride the stationary bike for 20 min at .5kp with no rest stops,
(3) walk the treadmill for 30 min at 2.0 mph with no rest stops.
 I do not know that I will ever be able to do this. I was up to 20 minutes on the treadmill at 1.2 mph, but got knocked down to 5 minutes at 1.2 by the infection that I just got over.  But, Just think what I would be at if I had not been
exercising at all.
COPD can and dose make all of us who have it miserablely alinated from the rest of society.  Seems we spend
almost all of our time thinking about being able to breath.  Of course how can you help but have it on your mind if you arn't able to do it.  I recieved an email the other day I would like to share with you.  It is as follows:
To All:

Sunday May 2, 1999
Here are some things I do to keep my home as clean as I possiblely can when I have no energy to
really clean it.  First thing you do is have a gargage sale and get rid of all knick-knacks and mainly
unuseful dust collectors. You know you don't want to keep dusting that useless piece of China or
what have you.  Next, all that you have to dust, furniture and whatever else that needs dusting,
use a baby wipe. It picks up dust and does not fly any in the air. Toss it when it is full and get
another one.  Next, get rid of all wall to wall carpet in your home.  The most unhealthy thing
you have in your home.  Day after day I hear lots of you worry and talk about being afraid to go
out because you are afraid of getting infections. Well you don't have to worry about getting
infections by going out.  You would not believe what is living in all carpet.  No matter how clean
you think they are.  I have a combination of tile, hardwood and linolium flooring in our home.
I have a dust mop that I put water on and wring out good. and dust the floor with that. then take
it off and wash it in the washer. I do not use "End Dust" as I have MCS and can't stand the smell.
 I have only limited amount of dishes left and arranged where I can reach easily.  Use a lot of cheap
Paper plates. Make lots of meatloafs, casaroles and freeze them and take from freezer to oven to
table in same bowl. Corningware washes off well with some soaking.  Also do some crock pot
cooking and since summer is here honey likes to cook on outdook grill.  I sit downwind of it, and
drink wine tee hee.  Rough way to live but, somebody has to do it.  I don't dry off after a shower
I put on a terry cloth robe and sit on the thrown and think about important world
events until I am dry.
At the same time that is an ideal time to lotion my body as I am getting kinda dry in places.
I have been out in the yard planting flowers in the yard and in pots and I am exausted, but I have
visions of a flowered patio with family and friends sitting around in the good old summertime
sharing and living.  and I think as I am sure many of you do How many more years do I have to
enjoy all that God has given me.  None of us know that answer.  I just know I never want to take
for granted one precious moment he has blessed me with. I just wanted to share my thoughts
with you today.  They seem to be fleeing these days. The thoughts and the days that is.

Tuesday May 18,1999
Well, I am still here and still carring on with my life, such as it is.  I have been to the tx doctor at HUP since we last talked and I also have been to my regular pulmonary Doctor.  They both said "You arn't moving any air"  I know that,  What I don't know is why I'm still walking around?  Everyone knows that no air moving = death.  Guess the spirit is pushing to ignore what body says.  I am always sleepy and fatigued.  All the time.  Can't  keep my eyes open.   Of course, fatigue is also a symptom of depression.  It's hard to know just what's going on with COPD?  Allergies?  Medications?  Depression?  It can get depressing just being sick so much.  I'm wondering if I ever will have another good day in my life of not.  It has been so long since I have had a day without fatigue or nausea or pain or Shortness Of Breath or something to screw it up.
 Thiscatch-22 cycle going on now is ......too tired and SOB to exercise........no exercise makes me tired and SOB.   I've read all the literature  on exercise but frankly, I just barely have the energy to get up and get dressed.  Renea and the boys are leaving when school
is out and of course she does not know I have no idea what I will do when she goes, but I do not have any idea what I will do.
I need help to even do the simpliest things.  I need someone here days when Don is at work.  I have no answer for this problem.  There is no answer in this state.  I wonder about other states? What do they do?  It seems to be a private, personal thing.  If you can afford someone to come in daily and care for you it isn't a problem. If you can't afford it,  it is a problem.  Personally I can't afford it.  And I am having mass anxiety attacks thinking of it.  And here I thought I was over those damn things.
My prayers are consoling and I know the only thing keeping me from the looney bin at this time.  Anyway. I'de just as soon skip it if I had a choice about it.  You would think after 13 years of knowing I had this disease (no telling how long I had it before I knew it) that I would move gently between stages of mild - mediumn - severe COPD.  There is nothing gentle about COPD.  It's a bitch and then you die.  It boils down now to how do I keep myself from loosing what little sanity I have left, worring about my care when she leaves.
 I guess if I do freak out, they will carry me away and that will solve that problem.
I have been sleeping all morning and can't eat because I am nauseated.  I need to eat.  I can't eat. I need to exercise.  I can't  exercise on a empty stomach.
I need to get positive.  Be back later when I get that way. LOL

I'm tired and I'm irritable and I'm wearry of this bag of tricks.  At one time there was nothing wrong with me that you could not fix.

Thursday May 20,1999
The item below was written by a friend on a support group I belong to.
Gene Downey <Gdwny@AOL.COM>
the weather has a great deal to do with our abilities to breathe.  I believe what happens to
you during humid weather is caused by several things.  One being when there is high
humidity the water vapor occupies more of the volume of the inhaled gases we take into
our lungs.  This starts to limit the concentration of 02 that can be delivered at the same time.  That can be noticed by a lowering of ones 02 stats using an oximeter.  But the increase of humidity in the air also causes more mucus it seems.  I mean in the lung area its self.  This mucus is always there as we need it to lubricate, protect, and trap and remove foreign
matter taken into the lung. But an excess of the same leads to a film that the 02 needs to
get through to then be diffused through our lung tissue for our bodies to get into our blood
stream.  This can cause a problem.  Plus, if there is allergens in this air, our lungs can react
to those also.  So it is a multifaceted problem.  I have seen myself have some coughing problems and the like if one uses a nebuliser with sterile water in it.  The high humidity
reaching the lung causes some discomfort at first.  But then the thick mucus is thinned
and one gets it out of you.  Upon recovery from coughing many times one can breathe
better.  But with high humidity all the time, the relief comes with the dropping of the
humidity.  One can get some relief by going into a closed house and have the humidity
lowered by running the A/C and it removes the water vapor or using the same principle]
with a dehumidifier.  That is why it can get better as it gets hotter out.  We retreat into
the house and the A/C runs because of the heat.  Try it.
Now when we have a heavier load from these things, the muscles and the body
has to work much harder to get the 02 we need.  This means an increase on the
respiratory rate and so an increase of the muscle use.  Plus, maybe a lower 02 supply
to those muscles.  Bingo!  We have some muscles complaining about this.  That is why conditioning helps in these circumstances.  So there is many factors.  One must try to
keep the cellular exchange and function as best as possible and balance the needs of
our lungs to the conditions we have or change those conditions as best as we can.  This
is a real pain, huh?  But there is some ways to attempt to do this as best as we can.
So making sure the muscles get the best nourishment they can get and the minerals
like magnesium and the like that helps them is important.  But I just had a couple of calls
from those I have talked to about using MSM for some pain to thank me for telling them.
 It has worked for them. That is with dealing with muscle problems like fibromyalgia and
the like. Enough said on that subject.

Keep watching and learning all you can with what effects your problems.  That is how
we learn.  And good luck in finding relief from your pain and discomfort.  We all struggle
with that.  But it is made easier by sharing knowledge.  I am having shortness of breath
and a burning tongue.  A neighbor just had a lawn care company spraying their lawn.
 BAD NEWS FOR ME!  I wonder how many people realize how much in health that they
pay for in making their lives "easier."
-----------
I just thought how right he is since we are all Chemically poisioned by a variety of
substances we have injested, smoked soaked in or gotten into our system one way or
another.  Some of us are so bad we can not be in the same room with someone who has shampooed their hair.  Life is hard for all us with Copd.  Most of us have more than the one problem of Copd.  Yet most of the people I have met who have Copd are more than willing
to go out of their way to help anyone. Anicer bunch of people you couldn't find anywhere.
You might say we are a dying breed.  But don't despire, The tobacco companies are giving
us 3000 new smoking kids a day as replacements.  Did you know that one in four people
walking around today has or will have COPD. "PUT THAT IN YOUR PIPE AND SMOKE IT."

the most important thing for us to do is hang on to as much as we can.  Because when it goes so does your reasons
for living.

Saturday May 22,1999
Hi Barbara,
I have been outside on and off all day today.  Enjoying the out of doors.
Summer is gorgeous here in eastern Pa. I have also been planting flowers
and watering and arranging new pots in the yard.  Killing caterpillars making
cocoons all over the place. Watching grand kids swing on a tire tied to the
tree in the back yard.  Watching birds building nest and the wrens already
have babies in the carport nest.  The cat is stalking squirrel under the weeping
Cherry tree. Boo Gwynne is frolicking in the tall grass and I see that the deer
were in the garden last night while we all lay sleeping.
This is a heck of a way to live, but someone has to do it.  LOL
Was it me who was depressed the other day?
What did I ever do to deserve even one of the blessings he has given to me?
I hope you enjoy all you have also.  God has been so good to us.
Also hope you are having a good breathing day.
have you ever read my journal?  In case you are interested........
http://www.webquarry.com/~boopack/corpse/
Your friend in Pa.
The Boo Mistress,

Thursday May 27,1999
We know a lot of our problems today were caused by cigarette smoking, but in a recent
email it was mentioned to me that they wondered how much of our problems could have
been caused by drugs.  Now there is a subject to ponder.  Don't you think?   I can think of
no generation in the history of man more insufferable than our own - "WW11 Babies"
You remember us don't you? We are the ones who were going to fix the world.  Right
after we finished doing all the drugs we could find.  We'll be back to you soon on
the world fixing thing.  Our problem was that the drugs were so darn good in the 60s
that we did not notice when our bell bottoms metamorphosed from denim to polyester
and our sandals to platform shoes.  We had stepped one toke over the line and before
we came to it was the 70s.  We awoke to the sound of Donna Summers moaning in a
strobe lighted room.  Our hearts were broken.  There was only one thing to do, become
dancing machines and deviate our septems!  Honest to Goodness, it seemed reasonable
at the time. And so the generation of revolution became the Me generation which, of
course, meant we had to become the most revolting Me we could.  This is possibly our
generation's only success.  We wore gangster lids.  We still believed in a better world
through chemistry but we gave up mellow drugs for ones that made us grind our molars
to dust.  We slept with anyone we thought might have those drugs, who it turned out
was everyone.  Then the 80s arrived and we became the generation of greed. I think this
was a bad rap. We weren't greedy, we were just broke from buying all that cocaine. We
needed junk bonds just to get back on our feet.  Now it is the late, late-90s and guess
what boomers?  It is almost over. We are old. Our  children are Yuppie larva.
The Age of Aquarius is now the Age of Antiquity.  There is gray in our ponytails and
beards.  All pants are now hip huggers by virtue of our hips becoming so darn
huggable.  It is time to forget social upheaval and concentrate on social security. And
pray we live long enough to collect.

"It is hard to believe that a man is telling the truth when you know that you would lie if you were in his place."
-- H.L. Mencken

Bill Poplett, Claude Baril, Richard Heering and Paul Marks

Monday June 7, 1999

I have an appointment with my ob/gyn doctor in a little while but I thought i would start this and come back to it later.  I have been so busy and so fatigued lately.  I have several pages that are down and need repair on them. I have so many projects
around the house that need work done on them and I just have to manage my time in accordance with my energies and decide just what is not going to be done.  There
just isn't enough energy for all of it.
All the deaths that have occured since I have started keeping a written record are just overwhelming.  I want to keep a record of these people, because they are from the two list I am on, the second Wind list and the COPD list. I started my list with the
memorial I did of Colin Bell a 20 year old young man from Ireland who died 5-12-99.
Here is his memorial.
Everything is going the same.  I am in rehab and doing 30 minutes on thee treadmill and I'm
using one pound weights on my wrist for my arm exercises. I have to really work to even get that much done. It is really hard, but I will keep trying to improve those numbers.
Renea is leaving to go back to Louisville with the two grandsons around the fourth of July.
I really will misss them all. I sure depended on her a lot.  I don't know what will happen now.
I am praying my panic attacks do not return.  I am praying I handle the heat through the
summer.  I am praying that I can keep infections out of my life.  I am praying for strength also for my
Donald as he really will have a load to carry now that Aleshia is leaving.  Also Little Boo is getting old
and is almost as grouchy as I am.  She just won't let anyone touch her but Donald or me.
She is really jealous of the grandsons. She is just getting so old and so crankey
The only other thing going on at present is trying to update webpages and open a page on exercise.
I made this card for the group today. Hopefully we can all one day learn we are all a part of the
whole. None of us is the complete.  And most assuredly we all need each other.

Wednesday June 9,1999
This Journal is about me and what it is like to live with this disease. I think it should also include what it is like for the person/persons who take care of us. The following is an account of what it is like to be a caregiver.  This is a lady caregiver for her husband who is the patient and has COPD.  They prefer to remain anonymous.  Here is their story.
Jim & I have been married since 1966 (& went together 4 yrs) so we are pretty much welded-at-the-hip, we think each other's thoughts, etc.  I love him dearly and I guess that makes being the care-giver easier
(although I have fallen on my face a thousand times since we began our struggle a few years ago!)
I ache for him to get a breath & pray that his strength and dignity return with a transplant.  I realize that HIS needs have to take precedence over mine, period!! (A hard lesson for a hard headed woman).
We are very far along in this thing so some of this may be of future use.
I try not to leave him over an hour or so a week (& then have our son or someone here).  We have cow bells by the bed and by his chair in case I'm in another room and he needs me.  We have 2 mile radius
walkie-talkies in case I'm working in the yard - I can check on him or he can talk to me.  If I have to go to the store and he's up to riding in the car, I keep the pager on me and leave him in the car with the
cellphone on the curb or in the nearest handicapped spot, he can beep me if he needs me and I leave the store.  The important thing is that he doesn't feel alone 'physically' - it's bad enough that serious illnesses make you feel alone in so many other ways.
I put off going to bed until he's ready (he dreads it every night as it takes his breath to walk to the bed and lying down changes the way he breaths).  I do my cleaning in the morning while he's still asleep -
using nothing with heavy fumes, but I do try to keep things as clean as possible to cut down on germs that could cause him problems.  I don't let anyone (including grandchildren) come in if they are sick or have a cold.
I TRY to understand if a medication makes him grouchy - and realize that he's not mad at me, he's mad at the situation, - at the helpless state of his body, - at the fact that his mind doesn't process information the way it used to because of lack of oxygen, - at the fact that panic attacks cause him to lose control, - at everything about aging and illness that makes it deplorable and sad, - at living day to day 'waiting,
waiting, waiting' for the end ...or a transplant, whichever comes first!  His prayer is that he not suffocate to death, I join him in that prayer.  I remind him that God has always taken such good care
of us, that He has been our everfaithful friend, I try to point out the positive, the hopeful things.  I include him in any and everything he feels up to, short rides in the country or visits from the 2 friends who
come by each week for coffee (yes, we do still have 2 friends).  If he's up to it, we sit with him and if not, we sit in the next room.
When he had radiation treatments for prostate cancer and lost so much weight, I took him small snacks several times a day between meals - a half an avocada, a spoon of peanutbutter, cheesecrackers, etc. (all suggested by the pulmonologist) & fixed Barley Green shakes, Soy shakes and anything else I could get down him.  We are very lucky that we got two years in cancer free so that we could get listed
(a few centers will take you after 2 years, most want 5).
The fact that Jim and I have been 'equal', and have shared most of our lives has helped us in the area of 'shifted responsibilities'.  Jim has always been the strong one in this family - and he has taken very good
care of me for all of these years.  It' s my turn to carry the load.  I don't automatically make all the decisions - I usually ask him what I should do.  But, there are times when he just isn't up to thinking about things and in those cases - I do the best I can.  I can tell when he's
glad I asked and I can tell when he doesn't give a hoot.
Sex was always a very big part of our life together.  For a long time, it was still possible - but different.  Once the breathing deteriates to the point that panic sets in just thinking about it - it's pretty much
out of the question.  There ARE times when he is stronger and 'willing' to take that chance.  The main thing I would say is to KEEP intimacy - by light hugs, touching your mate's arm or giving them a pat.  The worst thing is to stay clear completely and never even brush against them for fear they'll take it as a 'go'.  And TALK about how you feel and what you need.  I tell Jim once he's transplanted and on his feet, he's gonna owe me bigtime!  (Of course he has as much catchin up to do as me!)
Now for a selfish addition (for caregivers).  Remember - if your world has shrunk to a tiny circle, your caregiver's has as well.  WORDS can do wonders to help the caregiver that is feeling exhausted, unappreciated and looking at a bleak existence.  Be quick to give a compliment, thank them for their care, (not every time they do something - but often).
Try to be an easy person to take care of - meaning not to intentionally cause them to take a million steps, or be angry with them because they can move around and you can't.  Don't use them as a target for your anger and frustration.
We've had to work thru all of these things - and we are still working.  But, as the condition has gotten worse - our ability to handle things has gotten better.
THERE YOU HAVE HOW ONE COUPLE HANDLE THE COPD CARGIVER/PATIENT DAY TO DAY - WAY OF LIFE

There is no such thing as a failure who keeps trying; coasting to the bottom is to only disgrace.

Saturday June 12, 1999
I have another caregiver story to share with you today. I thought I would put the two caregiver stories together so they would have more of an impact on the reader. In this one the husband is the care giver and the wife is the patient.  Here we have a chance to look at what it is like for a man to carry the majority of the load.  I have been after my husband Donald to write his story
and until he does, we have only pete's perspective on the problem.  This starts off with Sue saying hello to all.

Sue Steinmetz <smetz@SONNET.COM>
Hi everybody...My husband is my primary caregiver and we have been married 22 years and I
still feel cherished and he is my best friend.  So...I asked him if he would write his point of
view.  He pecked away at the computer for about half an hour and here is what he wrote.
 You will notice that he is a very exuberant individual with plenty of energy for the two of us.
Before I turn you over to him, I want to says thanks for all the positive comments on my ABC wish list.

  Here's Pete:

well...asking for me to write a few words about my life with Sue...may bedifficult...as most of the people I work with,including 27 12-year-olds, and certainly my close friends know I'm A TREMENDOUS BULLSHIPPER...I can go on and on...and so the difficulty may be keeping me to
few words...anyway, background:  Sue and I have been together since April of 1975, when
she as a single parent, brought a rather rambunctious kindergartner into my classroom, we
had to have a "parent conference" right away...little did I know she was scheming on me, and
as I was near divorce...we hit it off, and eventually I would call in sick from her house, and the school would call right back, as yes, Sue was a substitute teacher...later when the district
saw how amazing she is they hired her and we team-taught for the next 17-18 years until the damn alpha-whatever, forced her into early retirement...the time we spent together in the classroom was fun, rewarding and just literally flew by...we are a perfect match...whatever I am...(bombast, irreverence, wise-ass..)  she is not...oh, no goodie-two-shoes, Sue is
reverently irreverant, sees right through facade (my phoniness) but is also an excellent judge
of character, of which she insists I have plenty...(the kids love me at school, even if the staff thinks I'm demented)..Sue is the Georgia O'Keefe approach to elementary ed. and I' more the Larry, Moe, Curly, WWF, South Park approach...She would teach pointilism to 6, 7, or 8
year-old students...I prefer square dancing or paper airplanes...or rock and roll parties with
lots of soda and chips and salsa...IN OTHER WORDS, we have this incredible yin-yang thing working, and we cashed in on this with our local school district for many years...after Sue
left work, I thought I would be at a loss, so I went to the middle-school kids and took a big
gamble after working 21 years in kindergarten, first or second grades...Sue, though at home, was there with me in spirit, and though I was terrified of pre-adolescents..(the wonder-bra set)..it turned out to be the best thing I could have done...my life in the primary grades was wonderful, but now I hate to leave my people in the sixth grade...I go early and stay late,
actually I leave Sue lolling in bed liesurely...she love to sleep in...always has...so I'm out
the door at 7 am, and usally get home by 5-6, and do a little reading of my kid's writing, while watching some trash tv...I was  born to be a sixth grade teacher...these are my friends,
confidants, and inspiration...when I get home with Sue...I usually bring some "school baggage" and Sue and I hash it out...well, she knows most of the personalities I talk about so it might
not be as bad as it sounds for her when I do "de-stress" before dinner...So, that's the background...we have a life that is extremely limited from one point of view, but from
ours, we are the luckiest people on earth,...like I said, I live with the best lemonade maker around...she has never spent one minute of her early retirement thinking of things we could
no longer do..our list of things "to do" is way too long and we almost never say "if we could only..."...I think most of our happiness comes from our unique desire to squeeze as much joy
and laughter as we can out of even the most miserable situations...our day-to-day journey requires some amount of energy trying to get a laff...I do this for a living in the classroom.
No one hates school anymore than sixth graders...My drive, my major goal in life is to bring
joy to the sixth grader's world...at times, it can be challenging, but usually I can do this quite easily.  I understood at an early age the importance of humor...Laurel and Hardy, the 3 Stooges..etc, and I feel the therapeutic importance of laughing has really helped us at home,
as well as in the classroom.  You have to find the joy, the humor, and laughter...just a
smile...is there anything more beautiful than a second grader, missing teeth, and smiling
over doing something as unpleasant as 3 digit subtraction with zeros correctly??  And so too
in our lives, we have figured out what we can do, and there are so many things...and WE DO
THEM...fortunately, Sue and I were never overweight, WE HATE EXERCISING!!!  So we never
have to go for a jog..go to the gym...work out and drink out of those ridiculous bottles of water..???  What the hell's so special about those little bottles anyway??? WE HATE TO HAVE
TO GO OVER FOR THOSE OBLIGATORY DINNERS AT SEMI-FRIENDS' houses!!! so now we never have to make up excuses!!!..WE LOVE DRIVE-THROUGHS...you can look like hell, and still
get your teri-yake bowl!  Sue has always been kinda sedentary and so she did not have to
give up all that much..she paints, she sews, she quilts, she cooks....she READS!!!! I mean
really reads, we love going to Barnes and Noble and we always come back with lots of stuff
that keeps us occupied for days...WE LOVE THE INTERNET...we are both addicted, and feel
this technology was invented just for us.  How did we ever exist before e-bay???  For that matter, Sue and I can remember getting one channel on a funky tv, with an antenna we had
to turn by hand, (it was wired to our front porch)...now we have 36 cable stations...(we don't want Primestar!!!
we don't have enough time to watch what we get now)...how about no vcr?? we don't even watch all the movies we get...WE ARE TOO BUSY!!! and last but, not least WE MICROWAVE!!
And I cook on the Weber alot...(jeez, I'm starting to spell like a 6th grader!>>>alot)
What I'm saying is that we have evolved through the last 24 years,and we keep changing.
Is it hard for us with limited physical contact???  It was probably harder for me to stop
abusing drugs and alcohol.  There was a very long time in my life where I was fairly stoned
or drunk most every  day.  I used to think, I just can't seem to have fun, without getting wasted...hell, now 2 beers and I get a headache, but I still love the Coronas con lima.  it's
just that we have evolved, and part of the changing requires new ideas, a little discomfort
and   FLEXIBILITY...just like the sixth grade...I look for new stuff, 'cuz I think it could be as
much fun as grade-level changing...I'm lucky, we got cell-phone, beepers, I work 10 minutes from my house, in our little foothill community, we are 3 hours from Stanford Med Center, so
I can go fish in the canyons, watch my kids play little league, but mostly I love sitting around
   with Sue... laughing, talking, gossiping, watching the tube, doing a crossword...or driving.
Sue and I drove to Maine lastsummer, before she was listed for transplant...You can do
anything you really want to...we're just lucky and don't really want to bungee jump
anymore...I'm a survivor of 12 years of Catholic schooling. (That's why I work in the public
school system.) They did a great number on my head and I still believe sex is overrated, and
just live vicariously I guess.  Sue and I can be close without the steamy all-nighters...but it's been so long that we've just gone on to other things...your life is what you make it.  I have never spent one second regretting anything that Sue or I have gone through, and it is a complete waste of time to see how crummy her disability is.  It just doesn't work.  Well, I
told you I wouldn't be able to keep this short.   It's just that I live with this really great
lemonade maker, and I real