It has been a long time since the last update, but I can asure
you that http://www.olivijai.com/corpse is far from being gone.
People continue to sent e-mail asking why I haven't manage to write articles to fit a regular schedule even with all the time
that has passed. Some suspected faulty computer hardware, others sudden death of the editor, and a couple of people even
blamed the weather. Some really silly blammings went to possible romantic entanglements and/or suicidal tendencies
due to lack thereof.
I am more than happy to address those concerns and to explain the absence of regular http://www.olivijai.com/corpse
updates: Sometimes, I simply don't feel like writing. I Don't look at it as work-avoiding, I look at it as helping to ensure
mental equilibrium. Some things are not meant to be shared with a greater public, and these include articles such as
"Why it Sucks to be the Least Attractive Participant at an Orgy" and "a Claustrophobics' Guide to Coffin Purchase."
OK, we might make an exception with those two topics as they are of crucial importance to the modern human being
at the dawn of the new millennium (so stay tuned), but generally speaking, So, no, http://www.olivijai.com/corpse isn't
dead. But there will be a small change to the original concept: from now on, we will publish things when they are done,
without caring about a schedule.
Those updates could happen once every two weeks, or once every two months. Whatever. But it's just as well possible
that there will be seven articles published in one day (yeah, right). We still aim at a weekly update, mind, so stop fussing
at me. I mean, not only is there no reason for the following to abandon http://www.olivijai.com/corpse.
September 17, 1958 - January 2, 2002
|Karen Fitchett passed on Wednesday, January 2 2002|
Edward Swanson & Sons
Madison Heights, Michigan 48071
248-588-5120 - Near 12 Mile Road
Sunday, January 6, 2002
3:00 PM to 9:00 PM
Memorial Service at the Funeral Home
Monday, January 7, 2002 - 11:00 AM
Christian Memorial Chapel Cemetery
521 E. Hamlin Road
Rochester Hills, Michigan - Between John R and Rochester Road
Donations can be made in Karen's memory to one of the following
Gift of Life
Ann Arbor, MI 48104
Alpha 1 Michigan Resource Group
Wilma Johnson, Treasurer
Madison Heights, MI 48071
Sympathy Cards may be sent to:
Mrs. Wilma Johnson (Mother) Mr. Danny Fitchett (Husband
27382 Palmer Court 2635 Silverdown
Madison Heights, MI 48072 Waterford, MI 48328
|Stephen Trost passed on Friday, January 4 2002|
an alpha, a biker, author, collector and artist died last night in San Francisco with his wife Luba and his mother at his side. There will be no services at this time. His ashes will be scattered at a later date in the Chesapeake Bay and Yosemite Park. Sympathy cards may be sent to Luba at the address below........................ My heart is truly broken.
341 Paul Dr.
Hollister CA 95023
ON A GOLDEN DAY
We knew freddie from her poetry and her art.
November 1999. Dance on, freddie....
I Am Not
I am not the medication
in the cupboard.
Nor the nebeulizer on the shelf.
And the machine there, in the corner-
Pumping air into my lungs.
Does not tell you who I am,
Or the songs that I have sung.
Do not look at me
For you will not view me right.
I am everything God made me.
And in my heart, I dance tonight.
freddie, on a golden day
|Freddie Holder passed on Tuesday, January 8 2002|
Thu, 10 Jan 2002
The service was so great because it was what my mother wanted and one I know she was very proud of. The family did the whole thing, My cousin in law is a preacher and my mom wanted him to do the leading of it Another cousin and his daughter played on guitar LET IT BE. Her sisters got up and one cousin and said something great and funny about my mother, When we got to the cemetery they released one WHITE DOVE for her to fly home to heaven , and 65 balloons for her 65th Birthday, which was the day she died on. I have forwarded all the e-mail you send to me to my aunts. And they have enjoyed them much. Aunt Mary's address is email@example.com I know she had asked me for yours because she had lost it when her computer crashed and she had to get another one. I will be leaving here on sunday, to return in april for a week. thinking about you and how much my mother enjoyed you and your mail. Mom will be at Madison funeral home ( 219 Old Hickory Blvd. Madison, Tennessee 37115) tomorrow at 12:00 for visiting and 2:00 for the service. the family will be doing the service, Mom was Cremated. My Uncle who does beautiful wood work is making the box. But Mom also wanted donation made to the lung association. My dad will have a hard time for awhile I have two brothers who live here by him so I hope it will be some comforted to him. I live in Fla. so I will be returning there on Sunday, and back here at Easter. thank everyone for there thoughts and
prayers they do mean so much. Donna
Terry Huffman passed on Tuesday January 8, 2002 This morning I received word of the death of Terry Huffman, husband of our list member Paula Huffman who received her transplant . Paula shared her story with 2ndWinders at http://www.2ndwind.org/Stories/paula.htm as well as pic of Terry and her. She can use our thoughts and prayers during this time. Stay well.
I asked for Strength - And God gave me Difficulties to make me strong.
Jean Rod Passed on Thursday, January 10 2002
I asked for Wisdom - And God gave me Problems to solve.
I asked for Prosperity - And God gave me a Brain and strength to work.
I asked for Courage - And God gave me Danger to overcome.
I asked for Love - And God gave me Troubled people to help.
I asked for Favors - And God gave me Opportunities.
I received nothing I wanted. I received everything I needed. - Thats Life.
|Blaize (Angel) Withers passed on Friday, January 25 2002|
My wife Blaize (Angel) Has cf had a double lung transplant May 27 2000. I have not been able to get on to post do to many things going on in life...... Angel has had Pneminia,,,,,,Has been in the Hospital with it since Dec 26,,,,,,,
She has been Trached, Vent and 02 dependent..... She is now sedated,,,,,
A few days ago I was told to be prepared for the worst,,,,
I went and picked her Stone out,,,,,,,
She luves Eeyore and Angels,,,,,,
Her stone will have an Eeyore Angel on it.......This will suit her to a T....
Last nite, I told her it was ok to get her wings.......
The past 2 days I have done some of the hardest things in my life,,,,,
|Gerry DiBuono passed on Friday, January 25 2002|
My sister, Gerry DiBuono who was a member of the group passed away on Friday, January 25th. Strangely enough, it was not the COPD that caused her death, but an abscess on her lung although it did contribute since her lungs were so compromised by the disease. I just wanted to let the group know since Gerry loved corresponding with all of you and I know it would be important to her. For myself, I just want to say thank you to all for your support of my sister. Your kindness and caring will always be remembered.
Carol Brooks passed on Friday, January 26 2002 It is with great sadness that I must inform you of my mothers passing. She died Saturday at 2:40 pm. It was very peaceful for her and our family. Last Monday, very late, mom wanted to see her family and have the vent pulled. The doctors were not able to put in the trach' at that time because her oxygen numbers were so low every time they moved her around. I figured this was the straw that "broke the camel's back". Dad & I rushed to Ann Arbor and talked with her. My brother was not able to go at that time. We spoke with mom. She was in some pain and was not sure she would get better. I asked her if she would be willing to wait a few more days to see if the antibiotics would work. She said 2 days. Dad said, then Saturday is okay with you? She shook her head yes. We thought by then there would be some improvement. Tuesday they were able to put the vent in and things seemed to look better for her. She said she was willing to try and fight again.
When I arrived to the hospital Friday the doctors informed us that there just was no more hope. They had exhausted all means available to them. Mom's lung would never function again and she would have to stay on the vent the rest of her life. Mom was adamant that this would not be the way she would live out her life. We supported her in her decision. Mom was being given morphine for pain and to help her relax. She knew Monday that there was no hope but gave her family the time to pray for a miracle. Several members of our family came to say good bye to mom. She was aware of our presence and was glad to have us there. She knew what was going on. The doctors checked
with her again before they disconnected the vent to make sure they were doing as she wanted. She nodded yes. They gave her morphine so she would be in no pain. It happened quickly and peacefully.
I want to thank you for your prayers and cards. They have meant so much to my family, especially my father. We will be making the funeral arrangements tomorrow. If you wish, you may send flowers or cards to Germain-Mohnke
Funeral Home, 225 E Edgerton, Howard City MI 49329.
The Brooks Family
Though no one can go back and make a brand new start,
anyone can start from now and make a brand new ending.
- Carl Bard
Jeanne Deshotel passed on Saturday, February 2 2002 You will find as you look back upon your life
that the moments when you have truly lived
are the moments when you have done things in the spirit of love."
~ Henry Drummond ~
Louise passed away Saturday Feb 2 at 9:30pm. She was surrounded by family members and was able to say her goodbyes and passed on peacefully. We all know how long and hard Louise fought for life and are proud to have
Louise Black passed on Saturday, February 2 2002
had our lives touched by her.
At Louise's request, no funeral service is planned. However, a celebration of her life is scheduled for February 16 from 2pm to 4pm in the Pasadena Room of the Radisson Hotel, 9100 Gulf Freeway, Houston.
In order to help defray medical and other expenses, a fund has been established in her name. Please send checks to The Louise Black Memorial Fund, San Jacinto Area Credit Union, 322 Preston Rd, Pasadena, Texas 77503,
Attention Ms. Garcia or donations can be made to the Texas Gulf Coast Chapter of the Leukemia and Lymphoma Society, 10777 Northwest Freeway, Suite 600, Houston, Texas 77092.
We are grateful for your thoughts and prayers.
The Black Family
Thusday, 10 January 2002
If you woke up this morning with more health than illness...you are more blessed than
the million who will not survive this week.
If you have never experienced the danger of battle, the loneliness of imprisonment,
the agony of torture, or the pangs of starvation ... you are ahead of 500 million
people in the world.
If you can attend a church meeting without fear of harassment, arrest, torture, or
death...you are more blessed than three billion people in the world.
If you have food in the refrigerator, clothes on your back, a roof overhead and a
place to sleep...you are richer than 75% of this world.
If you have money in the bank, in your wallet, and spare change in a dish
someplace...you are among the top 8% of the world's wealthy.
If your parents are still alive and still married...you are very rare, even in the
United States. If you hold up your head with a smile on your face and are truly
thankful...you are blessed because the majority can, but most do not.
If you can hold someone's hand, hug them or even touch them on the shoulder...you are
blessed because you can offer healing touch.
If you can read this message, you just received a double blessing in that someone was
thinking of you, and furthermore, you are more blessed than over two billion people
in the world that cannot read at all.
Have a good day, count your blessings, and pass this along to remind everyone else
how blessed we all are."
|Tom Wright passed on Tuesday. February 5, 2002|
I have the sad duty to let you all know that Tom Wright, one of the founding members of Second Wind passed away peacefully yesterday afternoon. He was the 11th lung transplant done at Shands Hospital at the University of Florida in October 1994. He, along with his wonderful wife Judy, served on the Second Wind board from it's inception and as co-presidents for 2 years.
This is indeed a sad day for me and for Second Wind. Most of you didn't know Tom since he didn't participate on the mailing list so please indulge me as I tell you a little bit about him.
As far as I was concerned, Tom Wright was Mr. Second Wind. He and his wife, Judy, were in the original group who decided to start
a support organization, which at that time was only for those with lung problems in Florida. Tom helped form the organization and guided it through it first four years of growth. In fact, Tom personally helped pay for the first Second Wind Directory. Heck, he and Judy probably typed the thing!
When I first found out I might have to receive a lung transplant in January 1994, I scoured the internet ( and every other place I could think of) to find out information concerning lung transplantation and to try to find someone who had actually received one. I have to admit that back in those days, there was precious little support available. When I went to St. Louis in January 1995 to be evaluated for a lung transplant, I happened to notice another patient reading a little newsletter, called the "AirWays". As you all know, we have plenty of time to read while waiting so I asked if they would mind if I read their newsletter. I cannot tell you how exciting it was to finally find people who understood what I was going through. Of course, I wrote down the mailing address so I could join this organization as soon as I returned to Little Rock.
The next thing I learned was that Second Wind was having a conference in Gainesville Florida. I could not believe my good luck. Up to this point I had never met anyone who had received a lung transplant and now I was going to have the opportunity to meet and converse with several of them. It was a dream come true. My wife and I attended the conference and in addition to learning more than I thought I would
ever know about lung transplants, I met Tom and Judy Wright. Tom took the time to meet all of the out of state guests and could not have been more gracious and helpful. I decided that if he was an example of someone who had received a lung transplant, it really works!
Of course, Tom quickly convinced me to "volunteer" for the organization and I soon found myself helping with the web site and the mailing list. Tom and Judy served as co-presidents of the board for two years during which time the membership grew from around 50 members to over 600. While they were president, Second Wind didn't have an office so the toll-free phone calls went to their home. They produced the annual conferences, sent out birthday cards, went to Shands Hospital once a week to run a support group, and basically spent most of their time helping others. Tom was an inspiration to me..... while I will never be able to be as giving as Tom, I know that I am a better person simply because I met him and had the opportunity to know and work with him. While the mailing list that Second Wind sponsors is an important function, it is only the tip of the Second Wind iceberg. Tom, and the others, who give of their time, money and talents to help others in a multitude of ways make up the 90 percent you don't always see. Goodbye, my friend...I will miss you!
|Dave DGMcNeill passed on Saturday, February 9 2002|
Dust if you must.
But wouldn't it be better to paint a picture,
or write a letter, bake a cake, or plant a seed.
Ponder the difference between want and need.
Dust if you must.
But there is not much time,
with rivers to swim and mountains to climb!
Music to hear, and books to read,
friends to cherish and life to lead.
Dust if you must.
But the world's out there with the sun in your eyes,
the wind in your hair, a flutter of snow, a shower of rain.
This day will not come round again.
Dust if you must.
But bear in mind, old age will come
and it's not kind. And when you go, and
go you must, you, yourself,
will make more dust.
Remember, a house becomes a home when you can write "I love you" on
|Dixie Pauline Burcham passed on Monday, February 11 2002|
Dixie was the first child of Gearry and Dovie Thornton, born May 6, 1934 and was a life long resident of Big Spring. She graduated from Big Spring High School in 1951 and attended Draughn's Business College in Abilene, Texas. She retired from the State of Texas on May 10, 1996. Dixie touched many people in her life, but children always had a special place in her heart.
She was a member of East Fourth Baptist Church and worked in the nursery, there until no longer physically able, Dixie kept children in her home after her retirement. She enjoyed her two precious granddaughters - LeAnne Dovie and Dani Cheryl everyday. Dixie was a very loving Mother and Grandmother who is survived by her children, daughter Cheryl Burcham and life partner Conda White of Austin, Texas; son and daughter-in-law Michael and Shelia Burcham, of Big Spring, Texas; a brother Harlan Thornton of Big Spring, Texas; and a sister and brother- in-law Saundra and Gary Powers of Cecilia, Kentucky. Two nephews and their families, Ricky and Dale Powers of Kentucky. Arrangements are under the direction of Nalley-Pickle and Welch. Services will be Wednesday February 13, 2002 at 2:00 pm. Burial will be at Mount Olive Cemetery. Thank you all so much for your loving support, prayers and friendship to both Mom and to us during the past couple of years.
Please always remember Mom enjoyed and loved each of you very much.
Woman Spends 51 Years in Iron Lung
By BILL POOVEY
JACKSON, Tenn. (AP) - For most of her 54 years, Dianne Odell has lived lying flat on her back in a 7-foot-long, 750-pound iron lung that breathes for her.
Her lungs, along with the rest of her body, were paralyzed by polio at age 3. But her confinement to the massive respirator hasn't stopped her from graduating from high school, attending college and writing a book.
And, she doesn't complain unless pressed for an answer for what it is like to live in an iron lung. Odell will quickly say she is ``always in pain,'' but then changes the subject.
Dr. Walton Harrison, Odell's pediatrician just after she was diagnosed with polio, said she has beaten all the odds.
``I didn't think she would last through puberty because her lung capacity was so limited,'' he said.
Odell was afflicted with ``bulbo-spinal'' polio - three years before a polio vaccine was discovered and largely stopped the spread of the crippling childhood disease. There were no more than 3,500 cases of polio worldwide
last year compared with 350,000 in 1988, according to the World Health Organization.
Iron lungs were first used to sustain life in 1928. They were largely replaced by positive-pressure airway ventilators in the late 1950s, and only about 75 to 100 are still in use in today, said Cheryl Needham, product manager for home ventilators at Respironics, a Pittsburgh company that makes and maintain respiratory equipment.
In some cases they are not used all the time.
About 200 iron lungs exist that can be recirculated among people who need them, but production of iron lungs ended about a decade ago.
Frank McMeen, president West Tennessee Health Care Foundation, said he has tried to find out how many polio survivors still rely on iron lungs and he believes Odell is the oldest.
The iron lung used by Odell ``produces a positive and negative pressure on her lungs'' that make the lungs expand and contract, like bellows.
``She can speak when she is breathing out,'' Harrison said.
An angled mirror rigged above Odell's face allows her to make eye contact with visitors at her parents' home about half way between Memphis and Nashville.
She has mastered ``sip and blow switches'' that allow her to control a television set. A voice-activated computer allowed her to write a children's book, ``Less Light,'' about Blinky, a tiny star who dreams of becoming a wishing star.
Odell, who is now writing her autobiography, said she wanted to show children, especially those with physical disabilities, that they should never give up.
``It's amazing what you can accomplish if you see someone do the same thing,'' she said in a halting, high-pitched voice.
Her father, Freeman Odell, recalls that after his daughter was stricken with polio, doctors insisted that he not touch her for fear that he or someone else would contract the disease. He said they predicted she would soon die, but he and his wife decided to take the risk and bring her home.
He installed a generator in a yard building as a backup power system, and many times has sat with his daughter overnight, fearful the machine would shut down.
Odell said the dedication of her parents is what gave her such a long life.
``I think God just looked at me and said, 'She is going to have a rough time. I better pick good parents,''' she said.
With the help of loving, generous teachers, Odell said she earned a diploma from Jackson High School as a home-bound student, and an honorary degree from Freed-Hardeman College.
Odell's dependence on the iron lung has meant holiday dinners and vacations at home for her family, but her mother, Geneva Odell, said that hasn't interfered with them sharing good times and laughter.
``We always have had a lot of parties and Christmas parties here,'' Geneva Odell said. ``Our life has been just really nice.''
Freeman Odell, a telephone company retiree, and his wife, both in their late 70s, said they get help caring for their daughter from her two married younger sisters, their church and their neighbors.
But they know their time caring for their daughter is limited and they worry about her future.
Friends and neighbors shared their concern so they recently held a gala that raised more than $110,000 for Odell.
More than 1,100 people attended, including actor David Keith, singer Gary Morris and former Vice President Al Gore. Some people knew her well, others had only heard about her determination and spirit, and wanted to meet her.
Odell was rolled onto an ambulance for her ride to the gala.
``She wasn't unplugged more than a couple of minutes,'' her father said. ``She said, 'I'm going if it kills me.'''
Odell wore a sequined gown designed for her by a local seamstress and a tiara. When she was wheeled into the room with an American flag draped over the machine, she receive a standing ovation.
``Dianne has a way of bringing you into her life and you are better for it,'' said Libby Murphy, chief organizer of the gala.
McMeen said his non-profit foundation will take care of Odell when her parents are no longer able to do so and the money will be set aside for that care.
Odell said some people might feel sorry for her, but she feels she has been blessed with good friends and a good family, and she is thankful.
``I've had a good life,'' she said.
"One of the secrets of life is to make stepping stones out of stumbling blocks."- Jack Penn
Thomas E. Teich passed on Thursday, February 21 2002 It is with great sadness that I must inform you that Thomas E. Teich died Thursday morning in Denver. Tom was transplanted at Barnes January 8, 1992. Memorial services are pending. Please remember his family in your prayers.
Memorial services for Thomas Teich will be held March 2nd at 1:00 p.m., at the Burns Memorial Methodist Church, 1095 Newark Street, Aurora Co.
Alice (Grannie) Tatroe passed on Friday, February 22 2002 "I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end." - Gilda Radner
Richard Gizzarelli passed on Monday, February 25 2002 My father passed away on Monday night in the hospital. I know how much he loved the group so please if you don't mind let eveyone know that he was thankful for such a group. - - - - - Karen
Mom died this morning. She came home from the hospital on Tuesday under Hospice. She slept most of the day
Florence Joslyn passed on Friday, March 1 2002
Tuesday. Wednesday she woke up and we talked for a while. She confirmed she wanted no tubes, machines or
CPR. She ate 3 pudding cups and a little Boost during the day. Thursday she was very short of breathe and
Hospice had me give her a small amount of Morphine. She slept all day and evening. This scared me because
they said the dose she was given was short acting. By 10PM, she looked terrible and had not urinated for 12
hrs. Hospice came out around 11:30, inserted a cathetor and told me she was dying.
Mom woke up around 4:30, moaning and saying her back was broke. She kept saying"Me dead, all of me is dead.
Why it take so long?". I hugged her and held her hand, told her I loved her, and she said "Goodbye".
Around 10 I gave her a bed bath. They had told me the night before her eyes were fixed and dilated when they shined a light in them. She asked me several times why it was so dark. I told her it was nightime. I changed her gown, walked in the bathroom to empty the water and came back in the living room to find her dead.
Arrangements were made this afternoon, I completly broke down when I had to pick out a casket. Her
brother is driving in from New Jersey in the morning (a 10 hr trip)..
I loved her so much. She was my best friend besides being my mother and I feel so lost. Thanks to everyone
who e-mailed me and prayed for us.
-Shirley, Buffalo, NY
Sue Masincup passed on Saturday, March 2, 2002
Donna Wall passed on Wednesday, March 13 2002 Everyone in the group should notice that their lives are going just a little better. We know the name of another angel. Donna Wall was able to escape her very ill body and move on to her new life, Along with copd she also had MS and had been bed and wheelchair bound for a long time. I have been told she loved to dance and imagine she is
doing that now. Thru this group and email Donna and I became such close friends - as she became to so many of us.
She seemed to spend most of her time trying to be helpful to others and I am sure she will continue to do that for all of us. Please celebrate Donna's life
Floyd Tilton the editor "guide" of the online publication Autism.About.com suffered a massive coronary and passed away. He was only 55. Floyd was tirelessly dedicated to the Kids and Parents of the Autistic Spectrum community and will be greatly missed.
Floyd Tildon passed on Friday, March 15 2002
His mission to create a voice in the Autism Community does not go unnoticed. His mission & dream can be one step closer as the Autism Spectrum Community joins together in sending our thoughts and prayers to his beloved wife Adelle and family.
Floyd was the father of an autistic son Aaron and taught Psychology and Human Development on the community college level for several years before joining Disability Determination Services as a Training Officer and Disability Examiner.
He helped to implement the disability redesign initiatives for Social Security and served as a training supervisor for Federal Disability Claims Managers. He taught English and Psychology/Human Development on the college level for 7 years and was named an Outstanding Instructor by the college. He deals with autism on a daily basis, having a son who is autistic, and has done extensive research into this condition.
He has attended and taught numerous continuing education programs related to disabilities and their evaluation by Social Security. He is also survived by his wife Adelle and and two daughters, Laura and Grace.
Floyd's services and funeral were held Wednesday with a Veterans Honor Guard. For those who would like to send a remembrance, the family has requested donations in lieu of flowers be sent to:
Chamberlain Funeral Home
W. Highway 20
Chadron NE 69337
Please keep Floyd and his family in your thoughts and prayers
Some people sit - some people try
Some people laugh - some people cry.
Some people will - some people wonít.
Some people do - some people donít.
Some people believe and develop a plan.
Some people doubt - never think that they can.
Some people face hurdles and give it their best.
Some people back down - when faced with a test.
Some people complain of their miserable lot.
Some people are thankful for all that theyíve got.
And when itís all over - when it comes to an end
some people lose out and some people win.
We all have a choice - We all have a say.
We are spectators in life, or we get in and play.
Whatever we choose - how we handle lifeís game,
The choices are ours - no one else is to blame.
HI ALL, JUST WANTED TO LET ALL KNOW THAT MY STEP DAD "POP" PASSED TODAY AT
Joe Bluejacket passed on Sunday, March 17, 2001
11:37 A.M. HIS BODY WAS TIRED BUT HIS SPIRIT TO FIGHT NEVER TIRED. HE IS WITH HIS LORD. HIS NAME WAS JOE BLUEJACKET. HIS GREAT GREAT GREAT GRANDFATHER WAS CHIEF OF ONE OF THE TRIBES OF BLACKFOOT IN OKLAHOMA. HE WAS PROUD AND WE WILL MISS HIM. I THANK YOU ALL FOR YOUR KIND WORDS THE PAST FEW MONTHS. I SPOKE OF YOU OFTEN TO HIM. NOW HE SEES WHAT'S NEXT.
KEEP THE FAITH.............BRYAN IN COLORADO
Nancy (Cleo) Merchant passed on Monday, March 18, 2001 Last night, the most important person in my life, an angel in every wonderful sense of the word, and a fellow AIAD passed away. Nancy succumbed from double pnemonia and massive bleeding in her chest cavity. She was peaceful and looked as pretty as ever. She fought hard for 18 days. You can all be very very proud of her.
I know this is terrible news to all.....many of you who have undergone transplantation and some are waiting to. I do not have AIAD. Nancy and I lived together for many years though we never married. I knew her as well as anyone I suppose and she cared deeply for all of you. The AIAD organization and emails were very important to her especially in the toughest of times. She got to know many of you over time and through emails. She rejoiced when she heard good news from someone who managed to overcome adversity as it gave her hope and felt deep empathy and sometimes even despair for those whose lives were cut short. But never did she ever give up her fight or her hopes and dreams. Not even as she took her last breath. She knows you will be saddened and hurt and many may feel despair. You mustn't ever let that stop you from believing that each day brings something very special. That life has infinite wonderment. That every day and experience is a learning opportunity. Find something, anything, each and every day to appreciate and hold on until, if you are blessed, you will have opportunities for more and more. That to give in or give up is the
worst thing you can ever do. These are not my words but Nancy's. It was Nancy's special gift to live her life in this way and to teach others by her own example. In some way this is also her legacy. To have known Nancy was a gift and a privilege. Her indominable spirit, her beauty both physically and spiritually, her incredible talent to create as an artist and writer, even to cook (she was a world class chef), all these describe Nancy, accurately. But for me, Nancy Naumann Merchant was the most genuine, honest and unselfish person I've ever met. There wasn't a phony bone in her body. When she inquired about someone, she really meant it and cared. She was genuinely curious about everything life offers. She cared about people, animals, even insects because she found beauty in all. Why? Because, she looked FIRST to find the beauty in others and in this world. Her personal relationship with G-D gave her the peace and strength to endure when others would have been given up and Nancy was tested in her life over and over by many obstacles of the most severe kind.
I try to find comfort in the notion that Nancy now has the freedom and rewards that paradise and heaven promises. For the rest of my life, a day will not go by when I will not think of her or miss her terribly. Or smile because of her. Through my tears, I know that I am rich from having shared a special love with her, am a much better man because of her, and will always have inspiration in the manner I should live out my life.
So mourn but please do not lose hope. For each of you have your own destiny and that you must always strive to attain that despite the setbacks. Enjoy your lives as Nancy did. And find peace and happiness in that. Say a prayer for Nancy and one for yourself.
As so as Nancy, a.k.a. "Cleo" always ended her letters, I wish you all a long, peaceful and happy life.
"Peace and grace", Steve Glaser
Mon, 18 Mar 2002Dear WMHS Class of "59 Members,Chronic illness sometimes is unseen by others.
We have lost another of our Class members. Jimmy Bettis died over the week-end from a ruptured Brain Tumor. We are so sorry to hear this sad news. This is more of a reason that we need to have a class reunion. I believe this
makes 12 of our class members we have lost.
I ask each of you to make a big effort to attend our reunion this summer Aug. 23 & 24th.
Colleen Harper passed on Tuesday March 19, 2002 It is with a very sad note to state that my friend who took me under her wings in 1994 and supported me through all my problems died last week due to complications of the kidneys. She had a single lung TX at Barnes in 1992 and was a very independant strong young woman. I will surely miss her....She is a member of Secondwind...... elle
Hi, all, this is Dave Arlynn's husband. When Arlynn passed away March 20 th I got a call from the Iowa Organ Donors. They ask me if we would like to donate any of Arlynn's organs. Mind you this is just within hours of her passing. At the time of their call I was not very congenial at all. I thougt it was very crass of them to call at the
Arlynn Baber passed on Wednesday March 20, 2002
first few hours of her passing. Well. I talked it over with her family. We decided to donate her pretty green eyes.
I was pissed but did not stop to think that they needed to know before too much time had elapsed. Anyway 2 1/2
days ago I got a letter from the Iowa Lions Club Eye Bank Assoc. stating that Arlynn's eyes will help TWO other people to see who otherwise would never, maybe, have had the chance. Arlynn was big on organ donation. But to know that someone else will be able to see this beautiful world thru her eyes gives me a thrill. She would have wanted
that. So, as soon as I get time I am going to change my drivers licsense to organ donor. She also would have wanted that. My lungs and liver may not be very good but they can have whatever they can use. After this episode I would have all of you encourage whomever you might know to become an organ donor. It is a very important part of our
lives , especially those of you on waiting list. I am not on a bandwagon or anything like that. Those were just my thoughts and hopes. I miss my "baby girl" very very much. Thank you for listening. Dave caregiver for Arlynn
Bob Reich passed on Wednesday March 20, 2002 Bob was TX'd at USC University on 1/24/02. Bob was 38 and had CF. He is survived by his wife and 2 sons.
Pat Ayotte passed on Monday March 25, 2002 I am sorry to inform you that my mother passed away early this morning. I know she took great comfort in being able to exchange with her friends on the internet. Thank You . . . .Marion Autry, Pat's daughter
Others cannot feel what they cannot see.
So if sometimes I look well, but I tell you I am in pain
please do not judge me, I wish I "was" well again.
Illness is not my choice it's what life dealt to me.
For you to disbelieve me or doubt me, breaks my heart.
For you are my Family, Doctor or even a Good Friend
Must I earn your "trust" all over again?
Chronic means on and off but always there
Today I may be able to do something, tomorrow maybe I can't
I have to try hard to work within my limit
Or the next day I may wind up at the clinic.
Funny how when you have a chronic illness and you finally adjust.
You find that it has led to another and you must handle that too.
Sometimes you have two or even more, oh my what a chore.
Some even tell you, You can't walk anymore.
All of these illnesses robs me of my life
I can never be normal like you again.
It is hard for me to accept what I am going through
I don't need the extra stress trying to convince you.
At times, I have mood swings, I may snap at you.
If I do I am sorry, Please understand, I am angry at "me."
I try to do what I've done before perhaps even a simple chore
But then I find that my muscles don't seem to work anymore.
I want to be that parent, grandmother or friend
the one I "use to be" when this illness came upon me.
The one I tried to be when I was there for you.
The one I "was" when I was able to do.
Every time I say no to you, don't be angry at me
Every No I have to say reminds me I am "not" normal anymore.
So please, don't doubt me, just try to understand.
It was not my choice! It is just God's Plan.
To all my friends and fellow caregivers:
Marty Curran passed on Wednesday March 27, 2002
My dearest Husband left this world on wednesday nite at 11:30 p,m, He went peacefully after a week of terrible distress. I was at his side and he knew that I was there and this was what I had prayed for. Thank you to all for your caring responses in the last 2 weeks and know that I will be praying for all of you.
Love & prayers Fran
Who's Packing Your Parachute?
Charles Plumb was a U.S. Navy jet pilot in Vietnam. After 75 combat missions, his plane was destroyed by a surface-to-air missile. Plumb ejected and parachuted into enemy hands. He was captured and spent 6 years in a communist Vietnamese prison. He survived the ordeal and now lectures on lessons learned from that experience.
One day, when Plumb and his wife were sitting in a restaurant, a man at another table came up and said, "You're Plumb! You flew jet fighters in Vietnam from the aircraft carrier Kitty Hawk. You were shot down!" "How in the world did you know that?" asked Plumb. "I packed your parachute," the man replied. Plumb gasped in surprise
The man pumped his hand and said, "I guess it worked!" Plumb assured him, "It sure did. If your chute hadn't worked, I wouldn't be here today."
Plumb couldn't sleep that night, thinking about that man. Plumb says, "I kept wondering what he might have looked like in a Navy uniform: a white hat, a bib in the back, and bell-bottom trousers. I wonder how many times I might have seen him and not even said 'Good morning, how are you?' or anything because, you see, I was a fighter pilot and he was just a sailor."
Plumb thought of the many hours the sailor had spent on a long wooden table in the bowels of the ship, carefully weaving the shrouds and folding the silks of each chute, holding in his hands each time the fate of someone he didn't know.
Now, Plumb asks his audience, "Who's packing your parachute?" Everyone has someone who provides what they need to make it through the day. Plumb also points out that he needed many kinds of parachutes when his plane was shot down over enemy territory-he needed his physical parachute, his mental parachute, his emotional parachute, and his spiritual parachute. He called on all these supports before reaching safety.
Sometimes in the daily challenges that life gives us, we miss what is really important. We may fail to say hello, please, or thank you, congratulate someone on something wonderful that has happened to them, give a compliment, or just do something nice for no reason.
As you go through this week, this month, this year, recognize people who pack your parachute. I am telling you this as my way of thanking you for your part in packing my parachute! I hope you will share it with those who have helped pack yours!
Friday, 29 March 2002
"Be it ever so humble, there is no place like home." And after a week's stay in any hospital, nothing else brings this saying closer to it's true meaning. I truly had enjoyed about as much of it as I could stand when I left there on Thursday afternoon. March 28. For those interested the following is the ongoing saga of "Olivija's hospital stay" Wednesday afternoon March 20th, and all night I kept having 'episodes' that consisted of any or
all of the following symptoms:
1. clammy sweats (heat pouring off my body)
2. chest pains
3. chills (entire body freezing)
4. high blood presure
5. feeling of real strong uneasiness (impending doom)
7. Back Pain
After suffering all night with this on wednesday and not wanting to bother Don with it and he had a meeting March 21, Thursday morning at work he shouldn't miss. I kept hoping it would pass, so he went into work Thursday morning. By 8:30 I had called him home. He got home in about 20 minutes
and took my blood pressure. It was 213/124. He immediately called the ambulance. By the time time they got there (about 10) minutes later and took blood presure, it was 203/104 They packed my unhappy self up to carry me off. By this time Snowball
is scared to death with all these big ambulance people all over her mama. She gets on the back of Don's recliner and jumps
over on the gurney with me. As if to say "Hey, this is a matched set. If one goes, the other goes with it." Don had to hold her so they could haul me away. I had my hand held portable fan with me as heat was at the time pouring off my body and I was
clammy hot. I had on a tank top and sweats only as we went out into the 42 degree weather. I was burning up. I felt like my head was gonna explode. I spent all day Thursday and all night Thursday night and part of Friday morning in the emergency room, waiting for a private room in the heart monitoring room. They started testing proceedures and blood letting immediately upon arrival there though. You name it and I had the test, while in the hospital this
week. I also had a potassium phosphate IV drip. and a Magnesium IV drip plus the saline solutions with gluecose the entire time I was there. I would have test done that begot more test that begot more test, that begot more test. I had heart meds
added to my pill regime. They game me shots twice a day in my tummy to thin my blood. Today my bloodpresure measurements will measure anywere from 110/80's to 166/92. Depends on if I am having an episode or not.
Yes, you are right, they found no answers. Some of the test results are not back yet. I have a pulmonary specialist, a cardiologist and a endocrinologist, all trying to work my problem. I am the topic of decussion at the weekly case meeting of endocrinologist this week. Yesterday afternoon when I came home, an ambulance took me to the MRI
service. Don drove me home from there. The hospital released me before I left to go get MRI. Any
future test will most likely be on an out patient basis. At This point they suspect a very rare tumor (one in 10 million) on the adrenal glands, called a Pheochromocytoma. Some information on this can be found at:
Recent Advances in Genetics, Diagnosis, Localization, and Treatment of Pheochromocytoma
Pheochromocytoma Group Support Site
Pheochromocytoma Medline Plus
Pheochromocytoma A tumor of the Central Adrenal
Merck Manual = pheochromocytomas
emedicine - Pheochromocytoma
National Cancer Instirute
I have recieved so many phone calls and emails that there is no way I can answer all privately, Just as there is no way I can possible express my thanks and let you all know how much I truly appreciate your care and concern for myself and my caregiver, lover, husband and friend Donald, who also stayed in the hospital with me the entire time I was there. If not there were about a half dozen incidents where things could have been hazardous to my health.
But that is an entirely different story of horror that I will relate at a future time when I am not as exausted.
I only had two episodes during the night. (But I did get to frolick in my bed with Snowball. She is so happy to have mama home.) Just not as happy as I am to be here.
BE IT EVER SO HUMBLE, THERE IS NO PLACE LIKE HOME!!!!!!!!!!
AND SO IT GOES. . . . . . . . . . . . .
Saturday, 30 March 2002
OK, I promised you all some interesting horror stories from this latest hospital visit and just so you won't be disappointed, here is the first installment for pondering. I am just about to doze off while lying in my uncomfortable hospital bed when in comes a vital sign worker. (I don't know what they are really called, that is what I call them.) he is sniffling every few seconds and I am thinking to myself this guy is either having an allergic reaction or he has a cold or he has a cocaine abused sniffer. So brassy ol' me says "You sound like you have a cold".
"Yes," he says "I sure do."
"So," says I "What thr hell are you doing here?"
He says "They don't pay for sick days here and the only excuse for not working is death."
Well, now, says I to myself. I have to think about this one.
So after he left my room I told the head nurse to call the hospital administrator and tell them I wanted to see them ASAP.
So when he came in and introduced himself, I asked him "Why they would send someone who is ill with a cold into a room with a pulmonary patient, with a lung function of 9%. Were they unaware or unconcerned?" "Either way it could be fatal for me and perhaps they should be more concerned in the future as they could be open for a law suit" I also told him I don't want to cause anyone trouble but if that was hospital policy, they needed to reconsider their policy.
I got no real answers, except they denighed it.
Anyway, after that I had no more unwell people come into my room.
(until the day I left, but that is another story)
How many stories are out there about sick people coming into your room
while you are in the hospital?
This makes absolutely no sence at all. Makes me wonder who makes up
And so it goes. . . . . . . .
- - - - -
Charlotte Freemon in San Diego
I read your experience in the Hospital Olivija and it just makes me cringe/angry......I don't know how you even had the energy to communicate this Pulmonary 101 stuff to these so called "Professionals"....I'll bet if you posted the name &
address of the hospital you'd have some of us writing our letters of conern on this life or death subject.....
I have been trying my very best to work with Perry on being alot more assertive if the time comes that I am unable to
speak and am in a hospital where People are comiing and going with colds, not washing hands or cleaning with products
that would surely send me into a tailspin.......
Maybe I should just go ahead and Make that BIG sign to be hung on my hospital room with DO's and DON'T before entering my room.....We just shouldn't have to be put in a position where we have to ASK and assert energy that we
just do not have......to just protect ourselves.....
I know that the reason I've been able to stay as well as I have in all these years is because I've stayed away from those GERM PITS.....Their employees don't even have to get a flu vaccine.much less wash their hands before entering a severe end stage lung patients room.....Its really hard having to ask these people IF they've washed their hands....I know I usually just let it pass when I visit my doctor but it angers me when I do.....I feel pretty sure he doesn't wash his hands....
I'm so happy that you are out of that place.....
Charlotte Freemon in San Diego
- - - - - - - - - -
Here is the url address of the hospital I stayed in this past week. http://www.crozer.org/htdocs/facccmc.asp I was told by several employees that it is standard policy to have no sick leave pay for employees. It is also standard policy for 12 and
14 hour shifts. I was told by employees this is standard proceedure at most hospitals. Hospital administration denighes this. My real point from the first post is what real facts do any of you hace on how your hospitals run?
Have any of you ever talked to the workers, nurses, aids? What are they saying? The more input I get from you guys is I think I have opened a real can of big, fat ugly worms. What fox is watching the henhouse? Is this what is ment by patients
advocacy? How do you feel about knowing that sick people are taking care of you, at your hospital? How many more hospital stays will I survive? How many will you survive?
Check everthing they do twice before you allow it near you, much less in you!!!!!!
It's a mad - mad - mad - mad - mad world, so stay tuned for another horror story that I encountered from the same hospital.
Thursday Evening - April 11 Had to return to the hospital. Blood Pressure going over 190/90. They kept me there
about 5 hours, took more blood samples for epernifferines (trying to locate/varify pheo) raised my Blood Pressure by
adding an additional 10 meg of vastec in the morning. I am still experiencing all the following symptoms
1. clammy sweats (heat pouring off my body)
2. chest pains
3. chills (entire body freezing)
4. high blood presure
5. feeling of real strong uneasiness (impending doom)
7. Back Pain
Sent me back home as there is really nothing they can do for me.
Was told to call doctor if Blood Pressure climed again to high of 190/90 or above. It scares me to know there is really nothing that they can do. My symptoms are constand day and night. They just take turns as to who's turn it is to plague me.
Tuesday Afternoon - April 16 I had my appointment with Dr. Wallach today and he gave me a scrip for another 24
hour urine test. This will be the third. He gave me a script for more blood work to get eprenine levels in the blood.
which we did as soon as we left his office. He said that the MRI showed a shadow byt no tumor. didn't know what it was. some test say yes pheo. some say nothing. He says all the data isn't in yet. but, he leans toward it is a "Pheo"
He says he will call me later in the week when he knows more. He talked some about doctors at Yale university Medical Center. Says he wants to call in some other doctors on this. Now, I will just sit and wait and let the Blood Pressure rise while I think of inpending doom and splitting headaches. And so it goes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Friday afternoon - April 19, 2002 Here i sit at my old friend the computer. Instead of being outside on this beautiful summer day.
I sit here at the computer. My skin can't make up it's mind whether it is hot or cold. I have a tshirt on and flannel pajama pants on.
I also have a sweatjacket that I put on and take off many times a day as the need hits. I also have a small fan nearby that I turn on and off as need be. The house is central air and heat and I am the only one who can't control my surrounding enviroment. There is
also an overhead fan for circulating the air. Last night I awoke more than I slept with night sweats and then chills. Sleeping bits and pieces in between. Blood Pressure is holding in the 140/80 area plus or minus 10 degrees. I would say today this is my big complaint. Although in the back of my mind always is the knowledge that noone but me knows what is really going on in my body,
and nothing has been given as RX for me to date. I have an overall feeling of doom as all that involved in this is more than my worn-out self can endure. I still am waiting to hear from the head man . He has not spoken yet. I know it is all in his hands anyway,
I try to tell myself that it is all in God's hands anyway, so don't worry and have anxieties. It has helped quite a bit but I know I want
so bad to live and see my children and grandchildren as they make a life for themselves. Everyone reading this, please pray for my Donald. He is so strong and it is with his great love and care that I have come this far. God has been so good to me.
Tuesday afternoon - April 30, 2002
Well, Today I had another appointment with the Endrocrinologist about the Pheochromocytomas. Seems the local hospital here
doesn't do the operation they would want to do on me. So they are talking of going to Jefferson hospital in Philadelphia. They are
talking about Laparoscopic Adrenalectomy to remove the Tumor if they decide to operate. They have started me on a medication with a mile long name, which I do not remember and since I left the script at the pharmacist, I will not know until I pick it up tomorrow when they call me that it is in. They had to special order it, because it is not kept in stock. Charge is close to $400.00
Tomorrow evening in the city is a meeting of Endrocrinologist, and it seems my perticular case is the topic of decussion. I suppose it
will be something like "what do we do with this one?" Anyway I have another appointment Thursday afternoon with my doctor to work out what Wednesdays meeting decided and how my body is reacting to new drug. It will take constant monitoring. Looks like I will have to have the big toxic radioactive necular test after all. The MIBG test. You clean your system out overnight, they then inject radioactive formula in your veins and do imaging for ???? unknown hours. More later in the week after I have started on new meds and checked with my doc, after the staff meeting.
It is absolutely amazing that I am not on mass doses of anti depressants, since part of the symptoms are anxieties of inpending doom.
I have all kind of hormones and endorphines and god knows what going crazy in my veins. I want you all to know that I really feel (for myself) that the reason I am as clear and lucid and calm as I am in light of all this is that I am reminded of the story of Jobe. It could always be worse, couldn't it? I have a loving family! I have careing friends! I have a God who loves and cares for me and has promised he will never give me anything to much for me to handle. God thinks I can handle all of this, so who am I to argue it with him.
I will continue to be strong enough mentally to drag this diseased ol' body around for as long as he allows me to remain and enjoy his wonderful pleasures on earth. (I can stand a little rain)
Your phriend with a Pheo