I have just gotten over a viral infection a couple of days ago It was a 24 hour stomach
virus that lasted more like 48 to 70 hours. Drank as much liquid as I could keep down
and tylenol with codeine avery 3 to 4 hours for First day which was the worst. then just
plain tylenol. When I talked to my doctor he told me nothing they could do that they
knew of other than what I was doing. He said there was a lot of it going around. Told
me if cramps or pain got to severe to come to emergency room for morphine. I wondered how one left the bathroom to go to the emergency room if this occurred. I have only had pain that bad one other time and that was when I had kidney stones. Birth did not hurt this bad. Oh well Thank you god I am well again and back to redecorating the house, Planning Adam's 17th birthday partyand doing my web pages. have been adding counters to pages and fighting with netscape communicator who rewrites the html when you try to add a counter to your page. All of this web paging stuff is so new to me and so much fun. It is a process of learning as you go. The more I do, the more I learn, the more I learn, the more I find out how much I have yet to learn. And also the more fun I have in that learning process. It is a wonderful tool to keep the mind off of the inevitable topic we are covering here. Most of the time I am not concerned with the morbidity of my disease. I try not to dwell on that aspect of it other than for the amusement of the vast audience I visualize myself acquiring. I mean after all if we cannot create in whatever environment we are given than we are not using our abilities God blessed us with. So that is why I look at this endeavor as amusing. All my flowers I planted in the wine kegs on the patio this summer have gone berserk and are growing like weeds. I have never seen such a green summer here in Pa. This is my tenth year here. We have had lots of mild days The right amount of sunshine, and every 3 to 4 days a nice 8 to 10 hours of mild rain. Just beautiful wonderful growing weather. My husband and Adam (my grandson have both commented on the fact that all one has to do is just turn a rock over and pick up the worms (for fishing bait) The robins are also plentiful in our yard for obvious reasons. I am debating whether or not to participate with the teenagers at Adams birthday party on Sat. Just as surely as I get around them I will catch something from someone. I always do. I probably will just watch the party from the large windows out the living room down into the back yard and further out into the woods. I also am looking now for someone to install pegged hardwood floors in the upper part of the house. This house will be completely allergy proofed soon, my husband hopes. What would I do though if I ran out of projects to keep me busy??? Later to all you dudes and dudettes.
Today the skies are overcast and the air is still and it is somewhat muggy. But to me they
are all beautiful, wonderful days to enjoy and use to the best of my ability. I enjoy a lot of simple pleasures now. I find it very rewarding to sit and enjoy the view from my living room window into my back yard and the woods beyond. We have a very large patio and a grape arbor just below the living room window and to look out and down on that is relaxing. This year Don cut six wine kegs in half and planted a variety of flowers from poppies to zanies in them. there is such a variety and so much beauty there. Late in the evenings he puts out seed and fills the large water bowl there for the squirrels and birds and chipmunks. Right below the living room is our bedroom that looks out also onto the patio and the woods behind. Then when I awake early mornings and cannot breath and I sit with my nebulizer it relaxes me to watch them frolic as I nebulize away. They and my nebulizer are my morning therapy. Tomorrow is Donald's 55th birthday. We are having a "catered affair" with his two sisters and their families. In the Gwynne family these catered affairs are refereed to as "pig outs," and as such we all try to live up to the name. I have lots to do prior to the party and limited energy to accomplish it all in. So today's events will be short. I will try to write more very soon, even though I try to maintain and have a life in between these postings.
"I am deeply
in debt to everyone who has ever criticized, cursed or condemned me."
August 8th, 1998 - Saturday
Overtime I sit down to write on this page I feel I should say something really profane that
will mean something to others who are reading this. Someone else could also be facing
death and need help in facing it and I have nothing to give to them to help them ease their
fears or longings or feelings. I only know that I face the thing called death as not death but a new beginning, a new adventure that I am totally unaware what it will be like as no one has ever come back with a report. I have to trust my Lord and my belief system that it is more wonderful than anything this small mind could conceive. I am reminded of this poem that explains some of my feelings.
I have not written in a while as I have had a lot going on in my life. One
of the events that has occurred and the one that has upset me the most is the one that my grandson http://www.olivija.com/grammy/ Adam who has been living with us is no longer living here as he was not progressing or growing or even trying to grow and leave the past behind. He was only perfecting his abilities of using people to his own ends.
We have had so many family meetings on this subject with him letting him know how close he was to having to go back home as my energy level was such that I was only willing to give if it were being used to learn and grow from. Otherwise I do not want to waste my last reserve of energy on someone using me and not contributing to doing better with their life. It hurt terrifically to tell Adam that it was over and he had failed the simplest test of understanding what our effort and output was all about. You can lead a horse to water but you cannot make him drink. Another item on the agenda was my mother visited me for 10 days and helped me clear out the house and get rid of a lot of clutter of whatnots and old clothes and stuff in the garage. We made $525.35 on the garage sale and I still have loads of stuff left. Don is going to take it to the Flea market this week and
hopefully he will get rid of it. If not I have it scheduled for a charity to pick up on the 29th of the month. It will not come back into this house. To much here to gather dust now. Dust is an enemy as it is hard to breath with any of it. In the last few weeks I have had spurts of energy and gotten some things done around this house, that I have put off for a long time. My daughter Aleshia and her husband and two sons (look under heading: a grandmother again) or go to: http://www.olivija.com/grammy-again/ have bought a fix me upper farm right outside Louisville Ky. Don and I decided to take a couple of weeks and rent a RV and go visit them and see what kind of squalor they are living in. ha ha ha ha. This place is about 30 miles from any motel. The house has open wallboard and concrete block and is dusty as can be. So I don't want to drive back and forth all day and night from motel to see her and boys so RV is only answer that makes sense. I am very much looking forward to this trip and hope it will not be too hard on me. My oxygen company has already delivered my oxygen for the trip. I will also take the concentrator, to use at night. I cannot wait to hug my grand babies and my daughter. I also talked to my older daughter who is 6 years older than Aleshia. She is doing a tour of Duty in Germany and will not be finished with it till 2002. She said she might come in October for a vacation but doesn't know yet. I certainly hope so as I miss her so much. Last I heard my son was working in Nashville and I just do not hear from him unless I call him. I think my disease scares him and depresses him. I have been trying to get things accomplished and have not been spending much time on my web site. I'm sure all that will change once gloomy winter gets here. Please say a prayer for me and others you come across in life who are given an added burden to deal with. Or is it an extra lesson to help us grow and become part of God's plan.
From your Dope on a rope friend.
This will be my last chance to post prior to my vacation trip that we will be leaving for
on Saturday morning. I have had some bad vibes about the trip. Even a dream that
frankly scares me a bit. But, after contemplation on the subject I decided that I can stay
here and not be afraid at all, or go on the long awaited trip, enjoy it and not worry. That
is what I have decided to do. I will go and enjoy the time with my husband and my daughter and my littlest grandsons. I am told they are very excited about grammy and grampy coming to see them. They may be, but, not nearly as excited as I grampy and I are. I have been wondering about the content of my journal here entitled "Future Corpse." I believe when I return I will lead it into other directions. I will be covering more of my daily routine on what it is like to live daily with this disease. My diet program. My exercise program. What I am able to accomplish on my own and what I am not able to do. There are things that I just cannot do that I use to do that are very frustrating to me because it means I have to ask someone else to do it for me. I hate infringing on others all the time. And although my honey doesn't always say so, I'm sure he gets tired of fetching for me. Maybe also by writing it down in a journal I can do a better job of doing for myself. I am going to go through a try to improve myself by diet, exercise routine and positive attitude. I am starting it the day I get back from vacation. I am just psyching myself into it now, so that I can make it a working, doable thing. Well, I'm gonna close cause it is only a few more days till I leave on the trip and I have lots of packing to do of things I have been saving up to take to my daughter and grandsons. Oh, by the way this is Ian Michael on the Left and Daevid Allen on the Right.
OK so I've been back from Kentucky for a little over a week and I haven't written in the journal. Well, trip was an absolute delight and if you can afford it a RV is the way to travel. We would pull over at rest stops for meals and eat at the table and maybe watch a movie or listen to tapes. or take a nap or play games or whatever. Then hit the road again when we wanted. This is the only way to travel if you have medical problems that even stopping to go to the bathroom in a restaurant is stressful. In a RV you don't have that stress. Anyway we took our time on trip and did the 750 mile trip in 2 days each way.
My daughter, her husband and the two boys are doing fine. We took them to Fort Knox, The Patton Museum and to the stock car races, while we were there. They were thrilled with General Patton's tanks. But, the thing we did they liked the most was the stock car races. We took the RV to the track and I stayed inside it with the air conditioner on and everyone else went on the roof with hot dogs, chips and dip and pop. Two seconds after it was over they were fast asleep. they wore their little selves out. It is so much fun being a grandparent. If you could just bypass parenting and go directly to grand parenting that would be the ideal way to go. Too bad it doesn't work that way, huh? Well Mike and Aleshia are living out in the Boonies in a fix-me-upper they bought that was a split up farm. they bought the part that had a small three bedroom house on it. It comes with almost 10 acres. Mike works at a factory in town and then at the house when he gets home. they are helping neighbors cut and hang tobacco so they will know how to do it so that next year they can grow and harvest their 10 acres in tobacco. It is kind of ironic to me that my daughter would be a part of the product that is killing her mother. Sometimes life is a bitch and then you die. do I sound bitter. well i'm not. I'm hurt that my daughter will end up with the same disease as me and the cycle repeats itself like ......oh when will they ever learn. Oh when will they ever learn. Remember that song, Aleshia. When you read this think of the pain you have helped me through when you were with me. Think long and hard about what you are doing in the long scope of things. If you don't
have your health, you don't have anything. Ask your mom, she'll tell you. Day after day passes and they are not nearly as full as they were when I was younger and had a hundred things going at the same time. I still have a hundred things going on in my mind. That is probably where my anxiety comes from, because there is still a hundred things going on in my mind. The problem now is that my body can't keep up with my mind. As a artist I have literally hundreds of art projects I visualize in my mind and no energy to create them. It is sad for me to know that all these neat ideas will never see reality as my limited time will not allow for them to come into existence. Then I try to think which of these is the most important to create. Ok, so none of them will cause the world to end if they are not created. Then I get to thinking "So, what's the point in doing anything anyway?" It is very easy for me to get into a downhill spiral, because everything gets a time limit put on it. I try like everything to not let that happen, to not even think about time limits. But when every breath is labored.........and some more than others........ There just seems to be an underlying urgency to produce something worthwhile from this life that was given to me. I have not used it to the best of my ability. I have no way to correct that now. I just keep searching for answers. I know all I can do is just keep on doing as long as I can. I also know that I will not go gently into the night. I will resist death with a vengeance. Death with his cycle and I with my oxygen tank as my shield will be doing battle from the edge until the oxygen tank is running on empty.
could this possibly be true?
When we cannot bear to be alone, it means we do not properly value the
only companion we will have from birth to death - ourselves.
- Eda LeShan
Wednesday, September 30, 1998
(Thoughts I have for those I Love)
It's almost a year now since my aunt Margarette died and I wondered what my
loved ones will do when I die. I know there will be much sadness and much
searching inside for your inner strengths that you may not yet know you
posess. Just know you will survive the loss. Do not grieve now of my inevitable
demise. Do not grieve then (in that unknown tomorrow.) "Time waits for no man"
(or woman) Do not be terrified that one day I will go through God's other door
and will not be there with you. Use the event as an opportunity to face the loss
with inner strength and know that "what doesn't kill you, makes you stronger."
I hope this doesn't bring you down but instead give you another perspective.
Got the results from my ABG Test and this is as good a place as any to keep
health records. ABG - ph = 7.40 pCO2 = 52 pO2 = 56 (on room air) As you can
see I retain carbon dioxide. Thanks a bunch R. J. Reynolds.
Today I decided to clean out my mailbox and I worked about 2 hours on it and got
about a tenth of it done. If I ever save up this much stuff to use again I hope
someone breaks my arm to try to prevent that from happening.
The leaves are definitely beginning to change colors here. there is more than
just a little nip in the air also. It is jacket time it gets down to the 40's at night and
the days are in the 70's. This is my least favorite time of the year. I do not like the cold.
I anticipate all the winter illness, that I spend all my energies trying to avoid. It is so hard to just maintain the state of health I am now. I have almost given up on ever making any
inroads. I weigh a flat 90 lb. and seem to stay around there all the time. You would think that drinking half and half and eating lots of fatty foods I would be a blimp, but no I
burn up about 8 times as many calories just breathing as you do. It also takes more
of my energy to get the air to move through my lungs. I know I also dwell to much
on my own pain of this COPD. I now have second thoughts about this entire page. To
continue doing it, will mean looking at the project as having both good and bad aspects
affecting my health. I need to just stop and evaluate my agenda occasionally.
Look out the window Olivija, and take your last look at a green yard and a patio full of Flowers. Winter will be here before you know it and the view then will not cheer you as much. It will be a long time from October 'till May. I for one will miss the flowers.
But, I also will lovingly await the planting of seed for next year's garden because
one is always nearer to God in a garden than anywhere else on earth.
. .you don't get to choose how you're going to die, or when. You can only
decide how you're going to live. Now. - Joan Baez
Wednesday - Oct. 7th, 1998First let me thank you for writing and cheering me up. I can't believe how hard it is to come to terms with this disease. Every time I think I have it conquered as far as acceptance, I get proven wrong. you would think that after 12 years of this living hell, and watching myself deteriorate faster than a snowball in hell I would not ever let it get to me. NOT!!!
Sometimes, like when I am having a very severe attack of not being able to breath I just become completely unglued and depressed and then come the tears and I get too choked up and then I really can't breath. I have this constant fear of being alone and not having anyone here if I can't breath. Even though I am married he works and can't be here all the time. I do not know what I would do If It were just I alone. I don't know if I could make it.
I am even thinking now of seeing if I can find someone who needs a home and would just be a friend to hang with, and live with us and help me with housework and think of it as her home also. I wonder how hard it would be to find someone like that???? Are your grandchildren young or teenagers? I have some of all ages. I have 3 children, 2 step-children, and 5 grandchildren and 2 step grandchildren and almost 100 past foster children. I have the most wonderful husband in the world, but he does so much for me
that he really does not have a life of his own and that saddens me a lot. He just spends all his time doing things I need, that I cannot do for myself. Finding a house mate would be the answer there also. Only my youngest daughter stays in touch regularly with me. But all my children live far away. My son is in Memphis, Tenn. My middle daughter is in the ARMY in Germany. My youngest daughter lives in the boonies in Custer Ky. Is that close to you? are you also on oxygen 7-24-365? It is the pits. The hose is always getting caught on something. My problem is more with the exhaling than with the inhaling. I have a hell of a time eliminating the CO2. I very seldom get a cough but, you are right it is a sure sign of pneumonia. Mostly when i start spitting up green stuff I have to start on anti-biotics as it will turn into pneumonia. Yea, I also know that feeling of sitting on the pot with the phone in there with me because I knew the doctor was gonna call me back. So when he calls and tells me to get to the hospital. I have to figure how to get off the pot to do that. Some times you just can't do what you know you need to do. Yes it is terrible to be alone and scared. It is horrible. How do you do it. I know you just do what you have to because you don't have any other answer. You wish to hell you did, but the fact is you don't. You are right, you have to keep reminding yourself that you still have some good days and that will keep you going. So I should stop feeling all this self pity and get on with the joy of living and the knowledge that I have lots of friends who care and share and that I do not suffer alone.
According to the American Lung Association 1 in 4 in the USA suffer from some Lung disease and COPD is the fastest rising.
Thank you for your prayers. They are returned. All in all, God is too good to us. I suppose I am just like JOB in the bible and find it difficult to learn the lessons in life I have been given to learn. I'm working away at trying to be a good student though, because This is one course I do not want to have to repeat. Thank you friend for being there for me.
God bless you,
"The gem cannot be polished without friction, nor man perfected without trials". -Confucius
Saturday - October 24, 1998Well, I have had quite a time since I last talked to the following here. On Friday
before labor day I had a major computer crash or as some might say the mother of all computer crashes. It seems that my fan on the computer had not been working for a while and all of a sudden my cursor went dancing across the screen then after that everything pretty much went to hell in a hand basket. My sweet husband Donald, was upset also as he was sympathetic to my loss as it now would take up his time to help correct this problem. He worked on the computer and on the phone with computer doctor and trips back and forth to the computer store. Finely after a week of my lifeless, complaining, bickering, moaning, nasty, stressed out self sitting watching his every move like a vulture waiting to devour rotten meat, He gave up and took it to the pros to fix. I got it back on the 20th. Now we are still loading old software back into it. which has to be done piecemeal as most stuff was lost in crash and also while in shop we decided to upgrade from a 5K -
166 Mhz chip to a pentium 2 - 300 MHz chip and also add 8 gig of hard drive. I now have lots of new bells and whistles to play with and a husband who hates computers. The problem is he deals with them all day at work and does not want to come home and deal with them. He likes to not deal with anything more stressful than solving word puzzles on wheel of fortune, when he is at home. So that is why I haven't been around the computer for almost 2 weeks. It was really stressful for me. I was experiencing withdrawal symptoms and didn't want to do anything but sleep. I am sure that is what attributed to my increase in Asthma attacks. Also during the computer down time I had the last doctors follow up appointment with the surgeon who did my LVRS, 2 and a half years ago. He is now recommending that I get a lung transplant. He seems to think that I would be an ideal candidate. They told me that also in 1986 when I was first diagnosed with COPD. At that time I was not on oxygen and I still was pretty much functioning fairly well. Discomfort only upon exertion. You know, like running or climbing over a flight of stairs or walking a long distance. Well, anyway now I am reconsidering my stance on Lung transplant. I told the doctor to set me up an appointment with a doctor at University of Penn. and I would go get evaluated and discuss the prospect with him. At this point I have less to loose as I feel quality of life is more important than longevity, for me anyway. Besides it takes usually about 18 months to get a lung. And the time between signing up and actually receiving lung is growing longer each year as there are more and more need for transplants and less donations coming in. At this point I would like to add following inserted information.
WOULD YOU LIKE TO BE AN ORGAN DONOR THEN JUST CLICKHERE
I have gotten very far behind on the work on my site by being down for almost two weeks, that it will take forever to get caught up. But, I will certainly have lots to keep me busy in the next couple of weeks. I hope you all have lots going on in your life to keep you busy. I would like to leave you today with the thought of sweet, wonderful life. Enjoy it. Use it wisely. Cherish it. Value it. Get in touch with the real meaning of existence. It has been years and years and years and years since I smelled the breath of a day (or two) old puppy and thinking how sweet that smelled. How precious that little life was. I was only in elementary school when I first smelled puppy breath and had those thoughts. But, it is as true today as it was then. ALL LIFE is precious and it is A GIFT from a loving God who ask that we put value upon it, and use it "TO SHOW WE ARE THANKFUL" he gave it to us.
Thank you for reading my journal.
.....................Doesn't that really say it all. No one can say it like Dylan...............
Please turn off Music at top of page before attempting to get application below to work
MY SECOND FAVORITE DYLAN THING.
LAST THOUGHTS ON WOODY GUTHRIE
When yer head gets twisted and yer mind grows numb
When you think you're too old, too young, too smart or too dumb
When yer laggin' behind an' losin' yer pace
In a slow-motion crawl of life's busy race
No matter what yer doing if you start givin' up
If the wine don't come to the top of yer cup
If the wind's got you sideways with one hand holdin' on
And the other starts slipping and the feeling is gone
And yer train engine fire needs a new spark to catch it
And the wood's easy findin' but yer to lazy to fetch it
And yer sidewalk starts curlin' and the street gets too long
And you start walkin' backwards though you know its wrong
And lonesome comes up as down goes the day
And tomorrow's mornin' seems so far away
And you feel the reins from yer pony are slippin'
And yer rope is a-slidin' 'cause yer hands are a-drippin'
And yer sun-decked desert and evergreen valleys
Turn to broken down slums and trash-can alleys
And yer sky cries water and yer drain pipe's a-pourin'
And the lightnin's a-flashing and the thunder's a-crashin'
And the windows are rattlin' and breakin' and the roof tops a-shakin'
And yer whole world's a-slammin' and bangin'
And yer minutes of sun turn to hours of storm
And to yourself you sometimes say
"I never knew it was gonna be this way
Why didn't they tell me the day I was born"
And you start gettin' chills and yer jumping from sweat
And you're lookin' for somethin' you ain't quite found yet
And yer knee-deep in the dark water with yer hands in the air
And the whole world's a-watchin' with a window peek stare
And yer good gal leaves and she's long gone a-flying
And yer heart feels sick like fish when they're fryin'
And yer jackhammer falls from yer hand to yer feet
And you need it badly but it lays on the street
And yer bell's bangin' loudly but you can't hear its beat
And you think yer ears might a been hurt
Or yer eyes've turned filthy from the sight-blindin' dirt
And you figured you failed in yesterdays rush
When you were faked out an' fooled white facing a four flush
And all the time you were holdin' three queens
And it's makin you mad, it's makin' you mean
Like in the middle of Life magazine
Bouncin' around a pinball machine
And there's something on yer mind you wanna be saying
That somebody someplace oughta be hearin'
But it's trapped on yer tongue and sealed in yer head
And it bothers you badly when your layin' in bed
And no matter how you try you just can't say it
And yer scared to yer soul you just might forget it
And yer eyes get swimmy from the tears in yer head
And yer pillows of feathers turn to blankets of lead
And the lion's mouth opens and yer staring at his teeth
And his jaws start closin with you underneath
And yer flat on your belly with yer hands tied behind
And you wish you'd never taken that last detour sign
And you say to yourself just what am I doin'
On this road I'm walkin', on this trail I'm turnin'
On this curve I'm hanging
On this pathway I'm strolling, in the space I'm talking
In this air I'm inhaling
Am I mixed up too much, am I mixed up too hard
Why am I walking, where am I running
What am I saying, what am I knowing
On this guitar I'm playing, on this banjo I'm frailin'
On this mandolin I'm strummin', in the song I'm singin'
In the tune I'm hummin', in the words I'm writin'
In the words that I'm thinkin'
In this ocean of hours I'm all the time drinkin'
Who am I helping, what am I breaking
What am I giving, what am I taking
But you try with your whole soul best
Never to think these thoughts and never to let
Them kind of thoughts gain ground
Or make yer heart pound
But then again you know why they're around
Just waiting for a chance to slip and drop down
"Cause sometimes you hear'em when the night times comes creeping
And you fear that they might catch you a-sleeping
And you jump from yer bed, from yer last chapter of dreamin'
And you can't remember for the best of yer thinking
If that was you in the dream that was screaming
And you know that it's something special you're needin'
And you know that there's no drug that'll do for the healin'
And no liquor in the land to stop yer brain from bleeding
And you need something special
Yeah, you need something special all right
You need a fast flyin' train on a tornado track
To shoot you someplace and shoot you back
You need a cyclone wind on a stream engine howler
That's been banging and booming and blowing forever
That knows yer troubles a hundred times over
You need a Greyhound bus that don't bar no race
That won't laugh at yer looks
Your voice or your face
And by any number of bets in the book
Will be rollin' long after the bubblegum craze
You need something to open up a new door
To show you something you seen before
But overlooked a hundred times or more
You need something to open your eyes
You need something to make it known
That it's you and no one else that owns
That spot that yer standing, that space that you're sitting
That the world ain't got you beat
That it ain't got you licked
It can't get you crazy no matter how many
Times you might get kicked
You need something special all right
You need something special to give you hope
But hope's just a word
That maybe you said or maybe you heard
On some windy corner 'round a wide-angled curve
But that's what you need man, and you need it bad
And yer trouble is you know it too good
"Cause you look an' you start getting the chills
"Cause you can't find it on a dollar bill
And it ain't on Macy's window sill
And it ain't on no rich kid's road map
And it ain't in no fat kid's fraternity house
And it ain't made in no Hollywood wheat germ
And it ain't on that dimlit stage
With that half-wit comedian on it
Ranting and raving and taking yer money
And you thinks it's funny
No you can't find it in no night club or no yacht club
And it ain't in the seats of a supper club
And sure as hell you're bound to tell
That no matter how hard you rub
You just ain't a-gonna find it on yer ticket stub
No, and it ain't in the rumors people're tellin' you
And it ain't in the pimple-lotion people are sellin' you
And it ain't in no cardboard-box house
Or down any movie star's blouse
And you can't find it on the golf course
And Uncle Remus can't tell you and neither can Santa Claus
And it ain't in the cream puff hair-do or cotton candy clothes
And it ain't in the dime store dummies or bubblegum goons
And it ain't in the marshmallow noises of the chocolate cake voices
That come knockin' and tappin' in Christmas wrappin'
Sayin' ain't I pretty and ain't I cute and look at my skin
Look at my skin shine, look at my skin glow
Look at my skin laugh, look at my skin cry
When you can't even sense if they got any insides
These people so pretty in their ribbons and bows
No you'll not now or no other day
Find it on the doorsteps made out-a paper mache«
And inside it the people made of molasses
That every other day buy a new pair of sunglasses
And it ain't in the fifty-star generals and flipped-out phonies
Who'd turn yuh in for a tenth of a penny
Who breathe and burp and bend and crack
And before you can count from one to ten
Do it all over again but this time behind yer back
The ones that wheel and deal and whirl and twirl
And play games with each other in their sand-box world
And you can't find it either in the no-talent fools
That run around gallant
And make all rules for the ones that got talent
And it ain't in the ones that ain't got any talent but think they do
And think they're foolin' you
The ones who jump on the wagon
Just for a while 'cause they know it's in style
To get their kicks, get out of it quick
And make all kinds of money and chicks
And you yell to yourself and you throw down yer hat
Sayin', "Christ do I gotta be like that
Ain't there no one here that knows where I'm at
Ain't there no one here that knows how I feel
Good God Almighty
THAT STUFF AIN'T REAL"
No but that ain't yer game, it ain't even yer race
You can't hear yer name, you can't see yer face
You gotta look some other place
And where do you look for this hope that yer seekin'
Where do you look for this lamp that's a-burnin'
Where do you look for this oil well gushin'
Where do you look for this candle that's glowin'
Where do you look for this hope that you know is there
And out there somewhere
And your feet can only walk down two kinds of roads
Your eyes can only look through two kinds of windows
Your nose can only smell two kinds of hallways
You can touch and twist
And turn two kinds of doorknobs
You can either go to the church of your choice
Or you can go to Brooklyn State Hospital
You'll find God in the church of your choice
You'll find Woody Guthrie in the Brooklyn State Hospital
And though it's only my opinion
I may be right or wrong
You'll find them both
In the Grand Canyon
Wednesday - October 28th, 1998
Ok, Back to me. Saturday I got an email from Dr. Fennigan, the Thoracic Surgeon who did my
LVRS. He told my to call Hospital at the U of Penn. NOW, their Transplant dept. and start the ball rolling on Lung transplant evaluation. He gave me phone numbers and names of people on the transplant review board and the surgeon. I talked to one of the names on the review board and got information on what to get to start process. Monday picked up form to sign to get pulmonary doctor to forward to them. Tuesday returned form to doctors office, and they will forward it to HUP (Hospital of University of Penn.)
I also picked up two week old and also past chest xrays to hand carry with me when I go for review. Every since I got this email on Saturday I have been as nervous as a long-tailed cat in a room full of rocking chairs. I am in the process of doing research on all aspects of Lung transplant. It has been around for only about 12 years. So there are no stats on long term survival for this thing. I do know that one drug I would have to take for the rest of my life is a drug that makes me psychotic. I have to find out if there is another drug that can be taken instead of that one. Any one reading this that has any information on lung transplants, I sure would appreciate sending me the information to help me do my own evaluation of this oppurnity/risk???? I have been working for about 6 months on recovering a couch in the living room. The last part of the two piece set is still half done. If i could only get away from this computer to get it done, but the computer has put an evil voo-doo curse and will let me leave for only 3 things. 1. eat 2. go to bathroom 3. sleep Any other time away from the computer I have to sneak away when server kicks me off and that does not happen often. It is certainly a beautiful fall here in Pa. Or at least in my neck of the woods. I look out my living room window into the woods and see every conceiveable color any artist could mix in fall colors. My flowers in the pots on the patio are beginning to thin and fall but they are still so many and so colorful and so beautiful. They are restful and meditative for me. I look at them as I "go within" something I feel others should do more often, also. Would certainly make for a better world.
0=================================0I have not heard anything from Hospital at U of Pa. in regard to an appointment to get evaluated for Transplant. I did call my Pulmonary Doctor's Office and my Medical records were mailed to them on the 29th of October so they have had time to get there and be reviewed by now. I guess on Monday I will call them back and see if I can pin them down on what is being done (if anything) I am so tired of being so tired all the time. I have no energy to do even the simpliest of jobs. I have trouble even taking a bath. Washing my hair is impossible to do as I cannot do all the raising of my hands that is required to rub shampoo in. all that hand and arm motion just exaust me. It takes the wind right out of me. I carried a large pillow (for my doggie) from one side of the room to the other and got completely out of breath from the experience. I just do not get everything done anymore that I use to do. So much just gets left undone. There is no one who can do it. I have so much energy and when it is gone it is gone. So everything gets prioritized. Can you imagine that it is tiring to just chew food. I have to live with even that. I do not roll my hair any more. It is cut short so I can just wash it and let it go. Not that this is my best style for me. It is just the only style I can have, I have to have someone come in once a week to do the vacuuming and mop the floors and dust the furniture. Donald does the laundry and the cooking besides his job he goes to every day.
Saturday - November 7, 1998
It is aa effort to drag around this oxygen cord from room to room. I do try to wash dishes daily.
I try to not leave everything for Don to do. It always surprises us both when I can complete a task. I have a stool I can sit at the sink with while I do the dishes. I can still easily do things where I sit and just do with my hands. like sewing or art work or computing. I am having a harder and harder time doing the treadmill and the bike. The only good thing about them is that I am so glad when it is over and done with for the day.
I cannot believe that Christmas is less than two months away. It is time I got those Christmas gifts together. I do all my shopping from catalogues. To shop at a mall takes more energy and effort than I have to spend. It is a lot easier to make out a list and work through the catalogues from my coffee table than fighting everything at the malls.
There is not much going on in my life at the moment. My ex-husband and his mother, (I still love her) It is just him (not her) that I divorced. are visiting Renea and her husband and our grandsons in Kentucky right now. I talked to her on the phone last night and Renea and she were both enjoying the visit so much. I was hoping that she got to see her great grandsons. She is in her 80's and the trip was over 1000 miles one way for her. I am sure it was a hard trip for her. She sounded well on the phone and still enjoying life. She truly is an inspirational person. Renea and Mike are trying to make up their mind as to whether they want to stay there and make a go of that place or give it up and come back here and live as an extended family which would be a help for us both. I told Mike and her both to think and pray about it. It is not a decision for them to make lightly. I will make it without them and they will make it without us. It is just it would be easier to work together. It would benefit both of our families. Well this is Saturday morning and Don won't be up till about 9 o'clock and then he will read paper all morning, at the breakfast table. Still working on web pages. I wonder if I ever will complete this task. It is overwhelming. Well, this is all for today. As Dennis Miller says......
I'm outta' here.......Sunday afternoon late, my daughter Renea, Mike (her husband) Ian Michael (7) and Daevid Allen (6), my grandsons arrived to begin our lives together as an extended family. Everyone seems to think that is the thing to do as Don needed the help to take care of all of it. Mike will find a job here. Thanksgiving everyone is planning on going to Aunt Di's house for our traditional Rib roast.
Have you ever watched kids on a merry-go-round
Or listened to the rain slapping on the ground?
Ever followed a butterfly's erratic flight
Or gazed at the sun into the fading night?
You better slow down
Don't dance so fast
Time is short
The music won't last
Do you run through each day on the fly
When you ask "How are you?"
do you hear the reply?
When the day is done, do you lie in your bed
With the next hundred chores running through your head?
You'd better slow down
Don't dance so fast
Time is short
The music won't last
Ever told your child, We'll do it tomorrow
And in your haste, not see his sorrow?
Ever lost touch,
Let a good friendship die
'Cause you never had time
to call and say "Hi"?
You'd better slow down
Don't dance so fast
Time is short
The music won't last
When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift....
Life is not a race.
Do take it slower
Hear the music
Before the song is over.
Friday November 19th
I am home after going into the city and fighting all that pollution and traffic.
Also that Hospital is so massive.
This morning I met with the coordinating nurse. one of the doctors and
the social worker.
All we did today was review my medical history and they asked me questions
where there were holes in what they knew of me. They answered any questions
I had which at this point were not many. Once I am accepted then I have a lot of
questions for them.
I have been passed to stage two which is an appointment on the 15th of Dec. for
Ventilation Perfusion Scan
PPD & Anergy Panel
DEXA Scan & Chest X-ray
Social Work Consultation
Next Day Appointment on December 16th
Pulmonary Function Test
Pulmonary Rehab Consultation
6 minute Walk test
Echocardiogram & EKG
Next Day Appointment December 17th
Report PPD. test reading
The members of the team that I met were some of the most personable, medical
professionals I have ever met. They made you feel really cared for and catered to.
So, I am over hurdle one and it looks like it gets rougher as further down the road
I go. But so does Emphysema or COPD.
Oh yes, by the way......
International Stats After tx......
in the first mo. 1 in 10 tx. Patients die = 10% loss
in the first year 1 in 4 tx. patients die = 25% loss
In the 5 years post tx. the loss is over 50+%.
After 5 Years the Stats START going downhill. LOL
The wait now for a lung at HUP is about two years.
If anyone has any other questions, Please email and I will respond after my nap.
I am exhausted.
Friday November 20th
Yesterday was the day I had the first step in the Lung Transplant process at (HUP)
the Hospital at U of Pa. I met with a co-ordinating nurse, one of the team of doctors,
and one of their social workers. It was determined that I met enough of the criteria
to go to the next level of evaluation which is a 3 day round of testing. My date
for having this done is December December 15, 16 and 17.
Tuesday November 24, 1998
Renea and I are making the pies. Which means she will probably make them as I direct. My energy level as usual is not all I want it to be. When they get settled in here by next week. We are going to work on a more aggressive exercise program and she will see I eat better as I now have someone to fix me more meals. My grandsons are such a constant source of love, hugs and kisses. It is wonderful, wonderful, wonderful to be loved by a child. They and animals are the most adoring loves in the world. I am so lucky to have these little guys living with us now. Don is enjoying it also. He really enjoys how they love on him and thinks he hung the moon. It will take a couple of weeks to get all their belongings in storage and what they do keep here to get in place. Everyone has plans and goals here and we all pray we are doing the right thing and that everyone will be considerate always of the situation we are living in. Hopefully we are all praying for the "self side" of all of us to consider more where the "other persons" is coming from. Prayer is the answer to making all of this work, so no one steps on anothers feelings. I have been working lately, (as always) on web pages and just trying to learn more on and about my computer. I just got a new 19 inch color monitor. was having problems with a tube in the 15 inch. It is mailed off for repairs and now I bought this one. I will keep the 15 inch for a back-up I guess or Don will get a small unit to do games with the boys on. Although Grammy is already teaching them how to do web pages, Grampy thinks they prefer star wars games. I really would like for people who read my journal to sign my Guest Book and let me know what they think of my "Future Corpse" journal. Let me know what you want me to talk about. My disease? My interest?
My so-called life? My lack of a so-called life? My stories? Art? What?
Or do I have to read your mind????
Well, OK then!!!!
Memorial to Brenda...........................................More of Brenda
Brenda Hoilman Passed on November 28, 1998 Doctor patient relationship: by BrendaWell my daughters family is finely moved in and the children are registered in school and they
Medical information given: by Brenda
Friday December 11, 1998
say they love it here and the school is great. Mike has a job here that he starts the first of next week with a computer company. My daughter is taking care of me and the house and all is well in who'sville if we can keep the grinch from stealing Christmas this year.
Speaking of Christmas, I do not have all shoping done yet. I am getting CRAZY with the thought of it. I can't not do it without feeling guilty and I hate doing it. Shopping is something that should be fun and done in your leisure time. Not hurried and harried. Tree is up as of last night and I am preparing for trip to be tested at HUP next week and I'm not looking forward to that either. It is bad enough that I have a zero energy level. Can you imagine getting tired chewing food. Well I do. One of the reasons I eat about 6 times a day. Small amounts and often vs. mediun size 3 times a day. There are all kind of things I have to do to conserve energy. That is going to be hard to do next Wednesday - Thursday - Friday getting all those test and having all those consolutations at HUP. I will have no chance to nap or rest.
Sunday December 13, 1998
As the time grows shorter between now and my appointed time at HUP I am growing more and more apprehensive. Seems that is all I can think of. I will be writing more next week as events unfold. Donald is puttering around the house this afternoon. Renea, mike and the boys have gone for a ride in the car and to the grocery store. I am here in the peace and quiet overlooking my magic forest typing away on the computer. I have just finished designing the birthday page for the COPD list and have about 65 names so far. Which is a pretty good start.
Now I need to design a logo for my url addresses I want to display on my correspondences, then I need to get all my paperwork and stuff together to take with me on Tuesday when I start the testing. Feel very morose today. Must be the rainy weather and the downcast looking day. Wet, dark and dreary. Like something Edgar Allen Poe would be quite pleased with.
The testing at HUP was over on Thursday the 17th and I am just now beginning
I asked God to take away my pride.
God said 'No."
"It is not for me to take away, but for you to give it up."
I asked God to make my handicapped child whole.
God said "No."
"His spirit is whole, his body is only temporary."
I asked God to grant me patience.
God said "no."
"Patience is a by-product of tribulations; it isn't granted, it is
earned." I asked God to give me happiness.
God said "No."
"I give you blessings, happiness is up to you."
I asked God to spare me pain.
God said "No."
"Suffering draws you apart from worldly cares and brings you closer to
me." I asked God to make my spirit grow.
God said "No."
"You must grow on your own, but I will prune you to make
you fruitful." I asked for all things that I might enjoy life.
God said "No."
"I will give you life so that you may enjoy things."
I asked God to help me LOVE others, as much as He loves me.
God said.... "AHHHHHH......FINALLY YOU HAVE THE IDEA!"
Monday December 21, 1998
to relax. It was quite an ordeal to go into the hospital each day and go through a battery of testing. All the smells and pollutants that live in the city are difficult to endure. I am glad all the testing is over with. The heart cath was the hardest on me as I had a reaction to what ever the dye was and it made me so nauseated. I was barfing and gagging for a couple of hours on an empty stomach. Today, I
was told that they would be presenting me to the committee for transplant. I hope I Passed the test to show that I am strong enough to handle the transplant. I also hope I have all my ducks lined up in a neat little row. Every little thing in place so that it will all fall into line and I have the support from all areas to cover and support a transplant. Only thing I would want more is to not have this need in the first place. More information I aquired Last week is that you go through 16 weeks
of physical rehab prior to transplant and 16 weeks of rehab afterwards.
Also I learned that you will spend approximately $3000.00 month on your medications. Sounds extremely excessive to me. But, what do I know, I never been here or done this before.
Well, Christmas is almost here and the "Bitty Boys" (Ian & Daevid) are so excited.
They are into everything looking for signs of goodies to come. Eyes lighting up at the sight of Christmas things. They went out last night with mom and dad and looked at Christmas lights on houses. They came home telling me about all the wonderful things that they had seen. Christmas is not much if you don't have a kid or two to share it with. I am so fortunate to have two beautiful Grandsons to share it with. I wish the other grandchildren could be here or at least know we
are thinking of them and wish them all the very best Christmas ever.
I will write another couple of times before the end of the year. I, also will start a new page with the beginning of the new year.
I spent new years eve with my daughter her husband, mike and Ian the 7 year old.
Of all of the organs the lung,
Is the hero that seems most unsung.
Without it your hue
Would be some shade of blue,
And there wouldn't be much past your tongue.
With no way to breathe in your air,
Pneumonia would be very rare.
Your X-ray if done,
Would be only for fun,
If just bones and a heart were in there.
The oxygen breathed I suppose,
Wouldn't go where it usually goes.
It would end up instead,
In your gut or your head,
Causing flatus from belly and nose.
Dyspnea would not be a word. The
thought of a rhonchus absurd.
That tool of Laënnec,
Would be the subject,
Of inventions that never occurred.
The lung cells are somewhat unique.
We have grants to sort out their mystique.
There's Type One and Type Two,
I forget what they do,
I'm a clinician and not a lab geek.
Without a liver or brain you'd be had.
And you need both a heart and gonad.
But no lungs? The anguish,
Of being a fish,
And of saying, "That flounder's my dad!"
PPH, IPF, LAM,
CF, COPD and green phlegm.
BOOP, CPAP, PEEP,
ARDS in lab sheep,
We'd never see any of them.
Without lungs we'd have no Philharmonic.
Having sex would at best be platonic.
With a real strong attraction,
Perhaps some quick action,
More likely we'd be anhedonic.
Your thinking would reach an impasse.
If you couldn't breathe in and out gas.
Couldn't go down if you,
Had to exhale it out through your bum.
Well, one final thought, one detail.
Without lungs, respiration would fail.
Could you breathe your last breath?
And go on to your death...
If you didn't have lungs to inhale?
Victor F Tapson
Duke University Medical Center, Durham, NC, USA
>>> >>000=================================000<< <<<
We stayed up to watch the new year in. Daevid the youngest one opted to sleep through it all. We watched the fireworks on tv and talked about plans and things to come, in our lives. Both of the chidren, Ian Michael age 7 and Daevid age 6 love the school they are in, here, We shared a lot of Ian's 7 year old jokes, on new years eve. It is so funny to watch the wheels as they turn in a childs head as they are learning to think and go through the process of growing in that capacity also. I really do feel privileged in getting to be in on that process. I should hear next week, sometime Monday or Tuesday from Hup to set up another appointment for evaluation process or set up rehab program for me. I am very anxious to find out if I was accepted for Lung transplant or not. I don't know why I have not brought myself to calling. I guess because I know I couldn't do anything to move the process up. The best thing to do is sit and wait. I know I'm not going anywhere.
As the new year is here and I reflect back on this illness and project into the future for myself. I do so with a lot of mixed emotions. A lung transplant is a trade-off. One set of problems for another. I am going to do a pro and con on the subject and look at it in black and white and list all the facts I am aware of, then look at it in and see what I have. Also this will be the last on this page. you will have to hit the purple glass ball below to learn more about my soap opera.
Questions I need to answer
What are the benefits and risks of transplantation?
What are my choices besides transplantation?
What does the evaluation and testing process include?
How does it affect whether I am put on the list?
What are the organ and patient survival rates for my type of transplant at this hospital?
How many of my type of transplant do you perform each year? How long have you been doing them?
What are your criteria for accepting organ offers?
What part of the transplant cost is covered by my insurance?
What financial coverage is accepted by the hospital?
How much will I have to pay?
What happens if my financial coverage runs out?
Who are the members of the transplant team and what are their jobs?
How many attending surgeons are available to do my type of transplant?
Who will tell me about the transplant process?
Is there a special nursing unit for transplant patients?
Can I tour the transplant center?
Will I be asked to take part in research studies?
Does the hospital do living donor transplants?
Is a living donor tx a choice in my case? If so, where will the living donor evaluation be done?
What are the organ acquisition costs if I have a living donor?
WITH LUNG TRANSPLANT WITHOUT LUNG TRANSPLANT How long will I live? ? ? ? ? ? ? Scheduled visits to Doctor Once a Month Once every 4 Months 0xygen Cost ? ? ? $300 to $600 a month Drug Cost Approximately $3000. Mo. Approximately $300. to $500.Mo. Physical Rehab. 8 Mo. @ 3 times a week @ HUP half hour day @ home Type of Drugs Taken Daily (See list below) Albuterol 4 Times a day in nebulizer Immune System Supressants Atrovent 2 Times a day in nebulizer Allegra capsule 2 Times a day Theophyolin 400mg/day Vasotec 5mg a day Pseudoephedrin as needed Fighting Infections ? Impaired Immune System take an antibiotic and wait Condition of Lungs Unknown from Day to Day Damaged Quality of Life Unknown Deminished ? ? ? ? ? ? ? ? ?
GOOD BYE 1998 AND HELLO 1999. I WANT TO EMBRACE YOU AND LOVE YOU AND HOLD ON TO YOU DEARLY. FOR YOU ARE SWEET AND FLEETING AND I DO NOT KNOW HOW MANY MORE OF YOUR KIND I WILL BE FORTUNATE ENOUGH TO SEE. I HOPE TO BE OF SOME HELP TO MY FELLOW BROTHERS AND SISTERS THIS YEAR. WHAT OTHER REASON COULD ONE HAVE FOR A LIFE, IF NOT TO HELP OTHERS, IN ANY WAY WE CAN. EVEN IF ALL WE CAN DO IS GIVE THEM A SMILE.
LOVE TO YOU ALL IN 1999.
A YEAR TO HELP OTHERS.