Make your own free website on

Dysautonomia Homepage- A guide to living with dysautonomia

Doctor Referral
Signs and Symptoms of Autonomic Dysfunction
Preparing yourself for a Tilt
Interviews and Site updates
Getting Involved
Get Togethers and Upcoming Events
About Us
Contact Us

A Collection of Stories and quotes that I have collected over the years and helped me through some rough times...

Life is not measured by the number of breaths we take, but by the moments that take our breath away!

From Making Miracles Happen by Gregory White Smith

If you or someone you love is diagnosed with a life-threatening illness,
here are the positive steps you can take to insure the best outcome
possible. They don't add up to a guarantee, of course. There are no
guarantees in medicine. But that's actually good news for people with a
serious illness: Maybe you can't be absolutely certain that the best will
happen, but you also can't be certain -- no matter what your doctor says --
that the worst will happen.

1 Take Control of Your Illness. You may think you're helpless, but you're
not. Take control of
your life back with a combination of information and attitude. Be a part of
every decision about
your treatment. Resist the urge to leave it all in your doctor's hands.

2 Insist on Options. Forget about second opinions. Look instead for second
options. There are
no absolutes in medicine, no inevitabilities. There are multiple solutions
to every problem. You
just have to find them. Don't be afraid of choices; embrace them.

3 Find the Right Doctor. Not all doctors are created equal. When you're
seriously ill, it's worth
the extra effort to find the best one for your condition. It can make the
difference, literally,
between life and death.

4 Build A Partnership With Your Doctor. A true partnership means there are
responsibilities on both sides. Your part is to be informed about your
illness so you can ask
questions -- you can never ask too many questions. Your doctor's part is to
answer them all,
fully and patiently.

5 Recognize That All Medical Decisions Are Trade-offs. Again, there are no
right answers.
Every decision regarding medical treatments involves weighing costs against
benefits. To strike
the right balance for you (everybody's balance is different) get all the
information you can, then look carefully inside yourself and decide what
really matters.

6 Sustain A Claim to Life. A good attitude -- call it optimism or "fighting
spirit" or whatever isn't enough, no matter how positive. You have to do
something. A will to live has to be
accompanied by a commitment to living: join a support group, make plans,
set goals; "renew
your membership in life."

7 Find An Advocate (Or Be Your Own). In a managed care environment, getting
the best care
can be a struggle. You can end up fighting your doctor as well as your
illness. If you haven't got enough fight to go around, enlist an advocate
to do the fighting for you.

8 Subdue The Enemy Within. Sooner or later, you'll hear a voice question:
"Why Me?" Learn to
recognize self-pity and resist it. Questions whatever bothers you; don't
let this one. Not now.
Another feeling to resist: guilt. Yes, loved ones are going through hell,
but it's not your fault.

9 Build A Support Network. You absolutely cannot get through this alone.
You have to depend
on people. Family, friends, caregivers, support groups, strangers, it
doesn't matter, as long as
it's somebody. But don't expect more of people than is reasonable. Don't
expect family or
friends to change just because you're sick. Don't expect yourself to change.

10 Don't Let The Disease -- Or The Treatment -- Change Who You Are. Don't
let the "I'm
Still Here!" syndrome get the better of you. Denial and surrender are bad,
but survival at any
cost is also dangerous, just in a different way. If the disease, or the
treatment, changes who you are, then you've lost the battle anyway.

11 Know When To Draw The Line. There's a line beyond which the price of
survival is just too
high, a line between what is worth fighting for, and what is not.
Thresholds of pain vary, as well as thresholds of fear and uncertainty.
Doctors often draw this line for patients; draw it for yourself.

12 Never Say Never. Everybody reacts to disease differently. Every body
reacts to drugs and
treatment differently. Every doctor has had patients who defied all the
medical textbooks and
prognoses. They've all seen "hopeless" cases turn around. For all the
advancements in medical
knowledge, the human body remains wondrous strange-- and full of surprises.

I want to die Living by Leo Buscaglia
    When asked what he wanted to be remembered for
                                    when his life was over Leo Buscaglia. replied: "I want to be remembered as somebody who lived life fully and with passion.
                                    I’ve been asked to write my epitaph and I have always thought that the perfect one for my tombstone would be, ‘Here
                                    lies Leo who died living.’"
                                        I want to die living. And I want to be remembered as one who lived with purpose, joy and verve. I want to spend my time
                                    learning what goes into a whole and happy life, then building that life the best I can.
                                        Sociologist Tony Campolo told about a study in which fifty people over the age of ninety were asked to reflect upon their
                                    lives. "If you had it to do over again," they were asked, "what would you do differently?" There was a multiplicity of answers,
                                    but three responses dominated. Here they are.
                                    I would reflect more. Do you ever feel that too much time is spent in "doing," and not enough spent thinking about what you
                                    are doing and why you are doing it? 
                                    I would risk more. Do you think that important opportunities either have been or might be forfeited because of your fear to
                                    take a necessary risk? 
                                    I would do more things that would live on after I died. Do you feel that you are immersed in something bigger and more enduring
                                    than your own existence? 
                                    Reflect more h Risk more h Leave a legacy.
                                    These are what our elders say they would do differently the second time around.
                                    But why wait for a second time around? Every new day is a second chance!
                                    Reflect more today—
                                    it will reveal to you what is truly important.
                                    Risk more today—
                                    take a chance on making that dream come alive.
                                    Get involved with something that makes a difference in this world—
                                    and a beautiful legacy is what you will leave behind

Hear the Music Before the Song is Over
Too many people put off something that brings them joy just because they haven't thought about it, don't have it on their schedule, didn't know it was coming or are too rigid to depart from their routine.

I got to thinking one day about all those women on the Titanic who passed up dessert at dinner that fateful night in an effort to cut back. From then on, I've tried to be a little more flexible.

How many women out there will eat at home because their husband didn't suggest going out to dinner until after something had been thawed? Does the word "refrigeration" mean nothing to you?

How often have your kids dropped in to talk and sat in silence while you watched 'Jeopardy' on television?

I cannot count the times I called my sister and said, "How about going to lunch in a half hour?" She would gas up and stammer, "I can't. I have clothes on the line. My hair is dirty. I wish I had known yesterday, I had a late breakfast, It looks like rain." And my personal favorite: "It's Monday." ...She died a few years ago. We never did have lunch together.

Because Americans cram so much into their lives, we tend to schedule our headaches.. We live on a sparse diet of promises we make to ourselves when all the conditions are perfect!

We'll go back and visit the grandparents when we get Stevie
toilet-trained. We'll entertain when we replace the living-room carpet. We'll go on a second honeymoon when we get two more kids out of college.

Life has a way of accelerating as we get older. The days get shorter, and the list of promises to ourselves gets longer. One morning, we awaken, and all we have to show for our lives is a litany of "I'm going to," "I plan on," and "Someday, when things are settled down a bit."

When anyone calls my 'seize the moment' friend, she is open to adventure and available for trips. She keeps an open mind on new ideas. Her enthusiasm for life is contagious. You talk with her for five minutes, and you're ready to trade your bad feet for a pair of Rollerblades and skip an elevator for a bungee cord.

My lips have not touched ice cream in 10 years. I love ice cream. It's just that I might as well apply it directly to my stomach with a spatula and eliminate the digestive process. The other day, I stopped the car and bought a triple-decker. If my car had hit an iceberg on the way home, I would have died happy.

Now...go on and have a nice day. Do something you WANT to......not something on your SHOULD DO list. If you were going to die soon and had only one phone call you could make, who would you call and what would you say?
And why are you waiting?

Make sure you read this to the end; you will understand why I sent this to you.

Have you ever watched kids playing on a merry go round or listened to the rain lapping on the ground? Ever followed a butterfly's erratic flight or gazed at the sun into the fading night? 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? 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? Just call to say "Hi"?

When you worry and hurry through your day, it is like an unopened gift....Thrown away... Life is not a race. Take it slower. Hear the music before the song is over.

Keep Your Fork
There was a young woman who had been diagnosed with a terminal illness and had been given three months to live.  So as she was getting her things "in order," she contacted her pastor and had him come to her house to discuss certain aspects of her final wishes.  She told him which songs she wanted sung at the service, what scriptures she would like read, and what outfit she wanted to be buried in. 

Everything was in order and the pastor was preparing to leave when the young woman suddenly remembered something very important to her.  "There's one more thing," she said excitedly.
"What' that?" came the pastor's reply.  "This is very important," the young woman continued.  "I want to be buried with a fork in my right hand."  The pastor stood looking at the young woman, not knowing quite what to say.  "That surprises you, doesn't it?" the young woman asked.  "Well, to be honest, I'm puzzled by the request," said the pastor.  The young woman explained. "My grandmother once told me this story, and from there on out, I have always done so. I have also, always tried to pass along its message to those I love and those who are in need of encouragement."  In all my years of attending church socials and potluck dinners, I always remember that when the dishes of the main course were being cleared, someone would inevitably lean over and say, 'Keep your fork!  It was my favorite part because I knew that something better was velvety chocolate cake or deep-dish apple pie.  Something wonderful, and with substance!   So, I just want people to see me there in that casket with a fork in my hand and I want them to wonder "What's with the fork?"  Then I want you to tell them: "Keep your fork ..the best is yet to come."  The pastor's eyes welled up with tears of joy as he hugged the young woman good-bye.  He knew this would be one of the last times he would see her before her death.  But he also knew that the young woman had a better grasp of heaven than he did.  She had a better grasp of what heaven would be like than many people twice her age, with twice as much experience and knowledge.  She KNEW that something better was coming.

At the funeral people were walking by the young woman's casket and they saw the pretty dress she was wearing and the fork placed in her right hand.  Over and over, the pastor heard the question; "What's with the fork?"  And over and over he smiled.  During his message, the pastor told the people of the conversation he had with the young woman shortly before she died.  He also told them about the fork and about what it symbolized to her.  The pastor told the people how he could not stop thinking about the fork and told them that they probably would not be able to stop thinking about it either.  He was right.

So the next time you reach down for your fork, let it remind you ever so gently, that the best is yet to come.  Friends are a very rare jewel, indeed. They make you smile and encourage you to succeed.  They lend an ear, they share a word of praise, and they always want to open their hearts to us.  Show your friends how much you care.  Remember to always be there for them, even when you need them more.  For you never know when it may be their time to "Keep their fork."  Cherish the time you have and the memories you share....being friends with someone is not an opportunity but a sweet responsibility.

I love these stories and sayings, and I have tried to give credit to the appropriate people. However some of these have come to me through e mail and no credit was ever made known to me, so if you know who I need to credit for any of the things listed on this page, please let me know.

Dysautonomia Homepage created by Tara Dawn Chiusano


to link to this site, please right click and save the banner above and link the image back.