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 really like beer, but I've learned that lemonade really is the best drink.  Write if you're still not convinced that I'm the luckiest, happiest person in the world,
and love my skinny little emphasyma...however you spell it...patient-wife...the biggest
bummer???  Her oxygen hose is always coiled up, ready to snare..but is that
it???? I can live with that...later, South Park is on....Pete
That is the story of Pete and Sue.  This is just one of millions of stories out there just like it.
How do I know this, you ask?  Simple, my dear Watson.  Because one in every four people
out there has some form of dibiliating lung disease. This is all for today friends.
Stop by later and I'll spit out some more openions ond other thoughts and try not to
bore you.  Thank you all for following my journal.
Later Dudes and Dudettes.

Thursday June 17, 1999
Today I am on my way out the door to go to rehab, after rehab I am going to stop at Millie's house.  She has hospice helping her most days and she is pretty bad off. She seems to have bronchitis all the time.  She is always coughing. The meds she takes do not seem to get rid of the cough and she doesn't ever cough anything up. It is like she is too weak to cough it
up.  I would like to share from time to time different things, thoughts, feelings, ideas and
such. Just to run by you what it is like to live with this disease.
Here are some thoughts by one lady I know.  In order to make my life fit my needs and vice versa I finally accepted the fact that the person before COPD will never be again. Now this person is a different lady as she is slow and deliberate with her actions, she has a schedule just as important as the schedules she had at work, and that is a medicine regime most important to our well being. I do not commit to any thing that I may have to cancel except Drs. appointment that way I am not disappointed when I cannot keep the date. All of the things that perturbed the other lady no longer are of importance such as the wash may get done on Monday and if it doesn't it will be there on Tuesday or Wednesday and no one else
cares either. The dusting and the vacuuming may get done and it may not if it doesn't it is
not a big deal any more.  I can now easily tell someone I'm sorry but could we visit another
day I am just not breathing well today and it would be difficult to talk as much as I want to.
To put this in a nut shell if it is not a life and death situation it does not take any of my
energy that I so badly need to breathe.  My information is that it takes us COPDers ten
times more energy to breathe than it does a normal healthy lunged person. Therefore I
place everything I need within reach when possible.  The dust mop and long handled
duster are kept in the laundry room out in sight so there is no effort to find and get them
to use. If I had a large closet for these that might do as well.  Part of my exercise routine
is walking up and down the stairs yes slowly and using diaphragm and purse lip breathing.
This way the big muscles that use so much oxygen can get the benefit and my breathing in
turn is better. Whether I feel like it or not I go to post rehab three days a week for an
hour of social and exercises where we are on our own but a whisper away from medically
trained therapist. I always come away invigorated. My record stands now at 10 minutes
@ a speed of 0.8 mph on the treadmill and that is after two months of the program.  We
also do warm ups before and exercises with weights at the end. What an accomplishment
for me in March I was still recouping from Prednisone tapering and pneumonia in October
and December.  Most of all my sense of humor and laughing is the best part of my life. I
had to get mad and say hey I can be bitter and miserable but I'm not going to be this
disease took away the life I loved and it will not take the fun out of life. That I can control
and I do. I stay away from negative people and things, they bring me down. If I get tangled
in my 02 tubing I laugh at myself and straighten it, pull it out of one leg of my jeans or out
of my blouse that I have buttoned over the tubing.  Life will be too short at any length to
be in a mad mood if I can swing it I will die laughing.  Most of all be easy on yourself and
do things in stages lay out your clothes, rest, get your toiletries together in the bathroom,
rest, then take your shower, use a big fluffy terry cloth robe to cuddle up in while you sit
to rest and dry without exerting yourself.  Find something you love to do that takes the
least exertion hand sewing, puzzles, crosswords, computer stuff this has been my saving
grace as I need mind stimulation as most of us do. I read a lot of things on the net since it
hurts to hold a book for any length of time. Try not to stay in one position for any length
of time that will eventually make you sore in the muscles that you are using too much.
Ask the Dr. for meds if you feel really different and not as good as usual. No one likes
meds, however, you will find you can wear yourself down real fast biting the bullet as I
call it. This is long and as I type it only brings more things to mind but I will stop my
babbling. It is just so important with this illness you do what you can do and do not
fret about the things you can no longer do because if you do, it only makes you more tired
and then sob. (short of breath) Cultivate a friendship with someone you like. There are
800 good ones to choose from on this list pick the ones that will teach you, urge you on
and praise your accomplishments that is how much love and compassion they feel for the
rest of the group and you too now.

Tuesday June 22,1999
Sunday was fathers Day and boy did we have a good one. Renea, the grandsons and myself
took grampy to Hersheys Park and boy did we have a ball. Ian and Renea rode everthing they
were big enough to ride, and Daevid and Grampy were very selective on what they rode, as
they have large quezzy grampy tummies.  We had a wonderful day and got home after midnight
and threw our dirty, sweaty, tired bodies down and went to sleep without a bath or even
undressing, we were all so worn out.

Tuesday July 6,1999
  The entire weekend of the forth was pretty uneventful.  Renea spent most of it packing.  Don and I went
to the mall and bought a mouse for the computer.  I wore out another one.  We also signed up for
@HOME Surburban Cable as our Internet Provider.  They will be doing the hook ups on the 29th of July and at that time I will drop Bell Atlantic and Voicenet.  Trying to get all those pages switched over to my Webquerry address before that date.  Don also took the grandsons fishing over the fourth and Renea took them to a fireworks display on the evening of the fourth.  In case a lot of you don't know the entire East coast is having a heat wave.  Philadelphia has been a little shy of 100 today with heat index of 105. It was only slightly higher yesterday.  The air is stagnant. Nothing is moving least of all the people.  I am sitting secure in my little air conditioned bubble wondering when the city will have a power outtage in my area.  An area in the city had an outtage Monday
evening until around 3 today. We had two brown outs this evening for about 15 minutes each.  Boeing aircraft closed down today and sent all home to give the electric company a break.  I have a large large tank of o2 if my power goes out.  I just don't know how long I can take the heat.without the air conditioning if power goes.  There have been 2 deaths yesterday and one today. This record is a tied record for the two days with a heat wave in 1914.  It is now 10:56 PM EST
and the temperture in my carport is 89 degrees.  Boo came in from her nightly walk with Don and asked me to please find the zipper on her fur coat.  That's the latest from the Boopack household for the evening.  Thought I would share with all.

I also want to share an email from "Don Lore
<folklore@USLINK.NET> on a subject that most of us are very familiar with.  The subject is Loneliness:

Loneliness:  I'd almost like to say, "It's nice I'm not the only one feeling this way." I guess the old saying, "Misery loves company." is very true as much as I'd rather not feel sorry for myself and I wouldn't wish this
disease on anyone. Just think though how much worse it would be if each oneof us truly felt we were the only one in this world with this disease.

Of course much of the problem is due to our immobility because of our SOB and the inconvenience of pulling an oxygen cart along with us or wearing a tank slung over our shoulder or in a back pack. Recently though
I find it's the time element that's hard to handle. I have never in my life had so much time on my hands with nothing to do. It seems like friends have less time for me but the problem is probably that I have more time and expect more time from them now that I'm ill.

We are no longer thrown together because of our jobs or other activities that we no longer can participate in. We feel left out because we aren't getting the attention we'd like to have.  In other situations we might be accused of being on the pity pot.

I know for myself, I need to get off the pot and do something positive withthe time I have on my hands. Killing time is a waste of time. I need to look at the time I have free as a positive thing, something I can use to my own advantage or to help someone else in some way.

I used to pray almost every day, "Lord, help me to develop a positive,cheerful, enthusiastic attitude and to share this attitude with those I encounter throughout this day." I need to start doing that again EVERY DAY!

Remember the little things, like, "If you see someone without a smile, give them one of yours." and "Take time to let the kid out now and then."

Life can still be wonderful as long as we do what we have to  keep our spirits up and take it one day at a time.

Enough already, this is probably to long to be posted but I can save it for myself and maybe share it with individuals if it's not posted.

Thanks for being good listeners.

Don in MN
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This loneliness is some of what I have been going through with my daughter and grandsons leaving and going back to Kentucky.  I am looking for someone on SS or disability who might need a
home and wants to share ours (my husband and Me) with us. I do not want to be alone the long hours he works and am determined to find the right someone to invite to live with us.
I feel for Don and me this is the right arrangement.  I plan on looking until I find the right person.
I also am waiting now for the results of blood test I had taken on Friday.  To see if they caught
in time with antibiotics the deer tick that we dug out of the calf of my leg.  I went on real strong antibiotics right away so maybe I will be all right.  It never formed a target. It just got real red and
then went back to normal. But, I have been dizzy and nauseated and hot aand cold flashes.
I am now in another holding patternfor the blood test.
In case a lot of you don't know the entire East coast is having a heat wave.  Philadelphia has been a little shy of 100 today with heat index of 105. It was only slightly higher yesterday.  The air is stagnant. Nothing is moving least of all the people.
I am sitting secure in my little air conditioned bubble wondering when the city will have a power outtage in my area.  An area in the city had an outtage Monday evening until around 3 today.
We had two brown outs this evening for about 15 minutes each.  Boeing aircraft closed down today and sent all home to give the electric company a break.
I have a large large tank of o2 if my power goes out.  I just don't know how long I can take the heat.without the air conditioning if power goes.  There have been 2 deaths yesterday and one today. This record is a tied record for the two days with a heat wave in 1914.  It is now 10:56
PM EST and the temperture in my carport is 89 degrees.
Boo came in from her nightly walk with Don and asked me to please find the zipper on her fur coat.
That's the latest from the Boopack household for the evening.  Thought I would share with all.
Life seems to be a series of holding patterns.
and so it goes for now.

Save a life, recycle yourself. Be an organ donor !

Wednesday July 7,1999
Today some words on lonliness from another friend in Pa. Who expresses the feelings that accompany
You are not alone...She has graciously consented to share in the hope of helping others deal with COPD.
I too have typed many an e-mail and Not sent them.  :)
I start thinkin'  and then the thoughts just ramble on. LOL
Its a big help to know that someone else has these same thoughts.
Just knowing that others feel the same way has helped me.  Thanks for sharing.....  Sophia in Pa   >@<
Lonliness is a big part of this disease.   Even at family gatherings.. I feel I have nothing to share. I know
this disease has changed me and the way I think of myself... in a big way.  And because I had smoked.  I even feel worse.
We all have needs as humans ... and we all have our own unique way of feeling good about ourselves.  I think we are confronting a new phase of our life, and instead of fighting the time... try to enjoy it.
I miss work tremendously...  you don't realize what a big part of life your work is.  Everybody says to
me...  you are lucky... you are home all day...well... I don't feel sooo lucky.  All the time you have spent there with everyone... its like losing a family.
I, know for one, doing for others is what made me feel good.  I have never given myself this much
attention and it feels alien to me. When we are well... our health is one thing we don't really pay attention
too...we just go along being there for others and we feel good about ourselves...when our body starts
with those... " I need attenttion now... and every minute of your day it interrupts what you want to do "  ...and I find it interrupts what I feel I should be doing...things that once were easy to do... aren't.  I find myself anxiety ridden and depressed, at the same time.  I feel guilt and shame.  I feel like I am playing hookey...  not doing what I should be.  I feel lazy and bad... useless...  etc. and I try to talk myself out of these feelings..... by concentrating on other things.
I think its a matter of switching our goals to more realistic ones.  Changing I can't ..to I can... one step at
a time.  And giving credit to ourselves when we achieve a goal.  Feeling better about ourselves will benefit us.  We have to schedule a whole new life...  we just don't fit in to where we once did. We have to mourn for our lost life as we once knew it and make a new one.  Easier said than done since we can not get around as we once could...it takes time but you will soon find many new hobbies and interests in life, and
meet new friends.
We become preoccupied with ourselves.  I know I try to focus...and concentrate,but in the back of my
mind all day....and probably night too..  I am trying to figure out how to get out of this dilemmat.  Its just
a bad dream, isn't it?  It is a slow adjustment.  We can only take one day at a time.  It really is hard to dream and set goals.... but we must still look forward to these to sustain us.
In time... you will add many new blessings to the ones you already have.
Have faith.....
Love, hope and dreams...
Sophia in Pa   >SoFreeA@aol.com<

Friday July 9,1999

I was listed at HUP in Philadelphia on 1-4-99 for a Lung Transplant.  I was told that the wait was 18-24 months.  I did not then think I would REALLY want a tx.  I did know I wanted rehab and if I got listed my ins. company would pay for my rehab. So I got listed and promptly found a rehab center.  I  joined and went to town on an exercise program that I am doing very well.  I just put everything, but exercise out of my mind because even the 18 month timeframe was a long way off.  Most of you, who have had tx, tell stories of their long wait.  So I am working along quite busily this morning, spinning out webpages when the phone rings and it is the beeper company in Dallas saying that my doctor at HUP had ordered a beeper for me. Well I have only seen him twice and he really hasn't said very much to me, or I to him.  We have not established any kind of repour with each other.  I am dumbfounded. I told the pager company to hold off as I wanted to talk to the doctor.  I have a call in for him??? (that could take a week to track him down maybe) I don"t know what to think.  Wouldn't you think the social worker or head nurse or doc or someone besides the pager company??? would have called me. I don't know what to do?  I don't even know what to be feeling?
I am truly in shock and now I have to FOR REAL decide if I am going to accept this beeper and do it or fight with my body the rest of my life because of the drugs I would have to be on.
I am in a TIZZIE and just this morning at 5 AM I kissed my two grandsons and my daughter goodby as they left here in their U-HAUL for their trip back to daddy in Kentucky.  I was in pain already from that loss (although I know they belong there)  My adrenalin is pumping through my body 99 miles an hour like a freight train at full speed and The Rail Road tracks are worn out, and the sound of the engine, and the clang of the bell are driving me crazy.
Now I think I will try to sit back and wait for doctor to return my call (or someone else from hospital's "Lung Team" is more likely) What else will this wonderful day bring my way?  Whatever it is, it can't top what has
already happened this day. Think i'll go check my horoscope.

Monday July 12,1999
Don is off work for two weeks to help find someone who perhaps needs a home as much as we need a companion/friend to be here with me as I very seldome leave except for rehab or doctor appointment.
Beeper arrived by UPS today.  I called HUP and gave them phone number as I had been indtructed to do.
Was told I could discuss this with doctor on the 5th of August when I have my next appointment at HUP.

Tuesday July 13,1999
This is an answer i gave to anew member of a list I belong to that is about COPD/Emphysema.
There is so much information out there on the web for you to read and arn't you glad you joined this list.
 You already know you can start with my list and follow with "Friends sites" under that very header on
the Bookmark page at: http://www.olivija.com/lungs/  Consider this:  We all are battleing COPD, which
is an umberella term that encompasses all the respiratory diseases you mentioned plus a multitude you
did not mention.  We all battle this disease to the best of our abilities with whatever we have to do
battle with  The mightest weapon any could have is knowledge of the disease.  You can't fight what
you do not know.  You cannot even discuss intelligently with your doctor, your care if you don't know
what the disease is about or will do.  To arm yourself for the BATTLE OF YOUR LIFE pick up the mouse
and start your research with just any search engine.  They all will produce for you on this subject of
"COPD"  Learn about your disease, so you can question your doctor intelligently.
One of the other strong weapons to fight COPD is exercise and it has been reported that only 7%
of rehabers continue exercise past rehab. Is it any wonder that doctors treat us like children, when
the majority of us should know better but don't.  We have just got to start caring and doing something
about ourselves.  That is not just you Alice. That is all of us.  Collectively.  God Bless us all.
Anyone out there that needs help with using search engines or really wants to know anything in reguard
to getting your answers.  I don't have many answers but I do know how to point you in the right direction
and give basic help on the computer.  If you need help in any of these areas. I'm willing to help and I feel
the only stupid question is the one not asked Your friend in Pa.
The Boo Mistress,
Olivija
------------------
Here is another email i recieved today and the answer I sent in reply.

Good Afternoon Olivija,
I found your website today while searching on COPD.  What a brave person you are to share your story
via the web. My husband is 48 and in Nov he was have SOB so he went for a checkup and was told he
had "last phase" emphysema and should see a specialist.
He immediately stopped smoking.  It took a month to get an appointment with the Best  who told us he wouldn't live a year if he wasn't accepted for VLRS -so, we went to the VLRS Center and had numerous
test only to be told he wasn't a candidate because there's only a small portion of  his right lung that is
any good.
I was wondering exactly what you felt about the VLRS - this fellow really emphasized the horror - the
high death rate, month of recovery, etc
We now have an appointment scheduled with another best of breed next week.  My husband is on 4
liters of O2 but he still works everyday and won't complain, so, I really don't know how sick he is.
I'll keep you in my prayers and I'll follow your website.
Eileen
= = = = = = =
Hi Eileen,
Yes it is always good to find another friend who knows what Copd is really like.
Yes it is also terriible there are so many of us.  There is so much to learn about COPD if you really want
to slow the process of it's progression.  It is a progressive disease.
But, it is up to YOU as to how fast the beast, COPD progresses. There is so much you can do to
help yourself and your quality of life for your husband.  I would encourage you to have your husband
start educating himself on this disease and eactly what it is and what he can do to help himself.
As for the Surgery you speak of it is called Lung Volumd Reduction Surgery LVRS and some say it is
great and some say not.  My openion at this point is you are not in a good position to judge whether it
would be good fot your husband or not until you and he learn more about the disease itself. You say he
has already quit smoking.  That is one giant step in the right direction.  the item in a COPD patients life that
makes the next largest difference is exercise. Learning how COPD allows muscles to atrophy and how that
adds to our shortness of breath. how COPD/Emphysema destroys and distends the alveoli distal to the
respiratory bronchioles.
I would like to send you My pages of bookmarks. Click on any item you want to read about.  I have spent
many hours compiling this list so that people would educate themselves so that they can live with some quality of life and decide their best options for themselves.
http://www.olivija.com/lungs/
Also here is my copd Resources page for further help.
http://www.megalink.net/~dale/olivija.html
Also, on my Bookmark Page, Under the header of "FRIENDS' WEBSITES" is
lots of help from other COPD?Emphysema with Websites dedicated to help also.
I hope your husband realizes the seriousness of him beginning to take immediate interest in learning about this disease and 3 to 4 mo.  He sees hundreds in between and has forgotten what little he knew of your perticular case by the next tyime he sees you.  You have to know and you have to learn if you care about your life.  It is at best a team effort with you and the doctor.
I will be glad to help/advise point you to the next steps after you have done much reading on this subject.
There id also an on-line support group Called the COPD-list it is in a lellow rectangle box at the top of my bookmark page,
If you are interested in joining it, just click your cursor/arror on the hypertext and then fill out form.
If you have any questions, I am more than happy to help in any way I can.  I was diagnoised in 1986 with severe  COPD/Emphysema and I am still here with a good quality of life.  Stap positive and keep a good attitude. It is so Important.  I hope to hear more from you and your husband.
Your friend in Pa.
The Boo Mistress,
Olivija

Wednesday July 14,1999
Here is a message from a cyberfriend with the disease of COPD/Emphysema who has something to say
and it is:  A Message to the many newcomers:     COPD is just another challenge for those of us from
the "Greatest Generation."  When I graduated from High School in 1943, our "Guidance Counselor" told
us that if we enlisted in July we could probably get the Red cord of Artillery, but as most of the divisions
were being filled, if we waited 'till August for the draft, it was definitely the blue cord of the "Queen of Battle"  Infantry.   Well we went and came back, went to school, got married, raised our families, smoked, we had our ups and downs.
Now some of us are facing the challenge of COPD,  It is not insurmountable,exercise, diet, good pulmonary care and we can have a decent life.  Above all is our attitude, and the  ability to fight this disease as we fought all of our lives.
Those of us who grew up in the 20s and 30s saw our parents struggle with the Great Depression, there
was another great generation.  Therefore, it is obvious that each generation has its greatness and shall  have a challenge. Don't let COPD be your last challenge, continue to prevail and look for new horizins.
Dave in SC

Saturday July 17, 1999
Although this was written last week. I had to wait for permission to reprint so I am posting it here under this date as date anyway is meaningless . It is the message itself that expresses some COPD feelings to a T. Come, step into our shoes, if only for a brief moment. (LUCKY YOU)
Subject: Re: [COPD] Not a good day!
   Date: Tue, 13 Jul 1999 07:17:39 EDT
   From: Sophia Stanski <SoFreeA@AOL.COM>

In a message dated 7/12/99 8:17:12 PM Eastern Daylight Time, Bren944@aol.com writes:
<< feel like thier on a roller coaster of emotions  Feel optomistic about my health  one day and down in the dunps the next,  >>
yes... most definitely....I think I am going to wakeup anyday now and find the nightmare is gone...
I think alot of it is how we feel and how well we are breathing....I try (trrrrry) to keep a good attitude...and find laughing alot helps.  The nurse at the doctors office...asked me how I could
feel soo happy ....  Well...what else are you going to do.... not much alternative...I try to cheer
those up around me..that helps me tooo....and especially try not to let my family see me so down...which is not easy...  (I have many a lousy day also...tooo many) At first... I would hide
from them....  and withdrew...actually pushing them away.... to make it easier on them....and me.... sooo I thought.. My son's perception of this was......  " You quit life " That really got me thinking....  I certainly didn't want him to think his mother was a quitter.

Laughter can't hide all the tears... or the anger we might feel...thats something we have to deal with... its a real part of life......learning how to cope and accept what we can no longer do.....
without making it everyones problem...now thats a biggie .....Personally I find complaining loud helps me....isn't that what they say.."its the squeaky wheel that gets the grease... "

I found one strategy that helps me cope.....it might sound dumb....When you have a lousy
day.... those around us feel helpless....but realizing we are only *humans* and learning to
forgive ourselves takes some of the shame and guilt away from our frustrations with
ourselves.  As long as we vent them in healthy ways....(no frying pans...LOL) others will
soon understand.
.when you are having a lousy day...be yourself and learn to love yourself as you are now....
(still working on this one).

Bad feelings are not good for your health...so think happy thougts.  And if you can't...don't
worry about it.  Follow doctors orders...and do the best you can. Try not to be so hard on
yourself.

I don't have to put on a happy face everyday...but it sure makes things easier.....and when I can't.....I will type another post to the list members...whom understand where we are coming from.....All the good people here will support us and lift us...stand us back up...throw us back in the ring....and we can go back to fightin' the good fight....in our own little merry way..   :)

 I am glad that I can now vent here.... if you all don't mind....squeak...squeak....God bless
.....Sophia in Pa  >@<

One plus is that we have each other to share our lousy days with....what could be finer......
~~~~~~~~~~~~~~~~~~~~~~
Monday July 19,1999
How to use nebulizer and practice pursed lip diaphramic breathing at the same time, to strengthen diaphram and increase strength and air flow.
It is hard to visualize a nebulizer that is completely new to the market that is not made like
the ones of old.  Ok?  Try to picture this.....The ultra sonic nebulizer is about the size of a
couple or three candy bars put together. you would hold it in your hand almost like a pan
flute. with (if you are right handed) your right fore finger over the on-off switch.  If you
keep your finger on the on switch continually for over 6 seconds it stays on until you
retouch it.  If on the other hand you have the nose plactic piece on the neb and you press
on and inhale through the nose.Then release the finger from the on switch by just raising
the finger from down to up, the machine stops, you exhale through pursed lips, you
put finger down on the on switch again, breath in the nose.  release the finger from
switch, machine cuts off you exhale through pursed lips.  You keep repeating until
treatment is finished.  I use the pre measured ventoline in the plastic viles.  The atrovent
comes the same way. I mix the two together in the container which is just big enough
for these two viles. At the rate of stop-go I do them it takes about 20
minutes to do a treatment. Since the treatment is completely silent. I just watch a sit com
or news program while nebbing.  Here is a picture of the neb I have been refering to.
Your friend in Pa......The Boo Mistress.......Olivija

Friday July 23,1999  through Friday July 30, 1999
I woke up this morning about 1:30 with an urgency akin to mass flooding attacking me.
Went spedily to the batrhroom and maybe a couple of drops emerged."Oh no," says I
"What is this?"  After many futile trips from the bedroom to the bathroom and it becoming
more painful with each trip.  I knew what it was.  It was the dread kidney stones.
I waited until about 6:30 before I woke Donald and asked hime to drive me to the hospital.
He wanted to know why I didn't call hime sooner and I really was hoping it would leave on it's
own. (which it did not)
They admitted me to the hospital, immediately put me on iv of saline, antibiotics and pain meds.
They gave me three different type, before they found one that didn't make me throw up.
Then they took me to ex-ray.  Between Then and Sunday the 25th in the late afternoon all the
did was keep the iv's going and pain medicate me.  They kept having nurses and aids with perfumes and lotions come in and the smells of the carpet, cleaning fluids, etc., etc., etc.
They moved me to another room when I kept having Asthma attacks one after another.
The new room was a little better but not much.  The only difference was I was the only
patient in the room.  By Sunday night, July 25th, I got the doctor to release me with a script for
antibiotics and Tylenol 3 with Codine.  By Monday morning, July 26th I called the Doctor and sat up an appointment for Tuesday the 27th for what we were going to do about all this pain.
We discussed wheather I wanted to wait and let it try to work it's way out or go ahead
and remove it.  I told him I wanted it out the sooner the better.
He told me to meet him at the hospital at noon tomorrow on Wednesday the 28th.  When I
got there they started getting me ready by removing my jewelry and inserting iv's with
antibiotics and pain medications.  Shortly after that they took me into the operating room.
My doctor gave me an epidural, which renders the bottom half of you paralized and you
don't even know you have a bottom. They removed a stone that was already out of the kidney and stuck in the tube between the kidney and the bladder.  It had jagged little points on it.
The stone was of a calcium-oxalate compound. I have been reading up on what causes this type stone and it is another study in the unknown "Science of Medicine"  For every thing they
say someone else says something else.  Supposely these are all qualified doctors.  Just
another chalk-up to show a medical degree is only "A reasonable educated guess." And,
unfortunately  "It is still a crap shoot at best"
Thursday the 29th and Friday the 30th of July I spent "stoned," because of the pain from the stones.  I can't believe I have to leave this stent in until the 6th of August.  I can't believe also how much blood I am passing in my urine.  It hurts to take a step.  My exercise programe I sat
up for myself is suffering.  I hope it will not take me too long to get back up to speed. I know
how much my exercise program helps me and i will not quit for anything.  I am continueing the arm ones even in the pain. The only thing the doctor said was he would give me something
stronger than Tylenol 3 if I needed it.  I probably do need something stronger and probably will call him Monday and let him know I have changed my mind. Maybe I can hold out till Monday.
That's going to be all for this page.  Please follow directions at the bottom of page to go to the continueing pages of my journey through life.
Thank all of yopu who have kept me in your prayers.  They do help.  Thave helped me.  They also bless the person praying them.
See you on the next page.
-=-=-=-=-=-=-=-=-=-=-=-
A Special Message
-=-=-=-=-=-=-=-=-=-=-=-

A weary mother returned from the store,
Lugging groceries through the kitchen door.
Awaiting her arrival was her eight-year-old son,
Eager to relate what his younger brother had done.

"While I was out playing and Dad was on a call,
T.J. took his crayons and wrote on the wall!
It's on the new paper you just hung in the den.
I told him you'd be mad at having to do it again."

She let out a moan and furrowed her brow.
"Where is your little brother right now?"
She emptied her arms and with a purposeful stride,
She marched to his closet where he had gone to hide.

She called his full name as she entered his room.
He trembled with fear -- he knew that meant doom!
For the next ten minutes, she ranted and raved
About the expensive wallpaper and how she had saved.

Lamenting all the work it would take to repair,
She condemned his actions and total lack of care.
The more she scolded, the madder she got,
Then stomped from his room, totally distraught!

She headed for the den to confirm her fears.
When she saw the wall, her eyes flooded with tears.
The message she read pierced her soul with a dart.
It said, "I love Mommy," surrounded by a heart.

Well, the wallpaper remained, just as she found it,
With an empty picture frame hung to surround it.
A reminder to her, and indeed to all,
Take time to read the handwriting on the wall.

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last edited 03-30-2003