Patience

They say patience is a virtue.  I say patience is a positive trait.  It is the ability to bear delay with confidence and calm.  This means maintaining a fine balance between inward peace and outward control.  It takes time and patience to reap the benefits of dialysis.  Minutes pass like hours and hours pass like days.  In our world of instant gratification, waiting is a learned behavior, and some people are just better at it than others.  Maybe we would automatically become more patient if we were to dismiss our exaggerated expectations of what is due us.  God's timing does not always meet with our own, and sometimes we are required to wait.  With this comes the trust and hope that God has a bigger plan for us.  Sometimes he removes us from a situation and other times he takes us through it.  Whatever you are waiting for, be it your treatment to end or your transplant to begin, know that, "For everything there is a season and a time for every matter under heaven." (Ecc. 3:1-2)  As for myself, I've always believed that "Good things come to those who wait..."

Hang in there...Jodi 

From Ma

Little did I know that when I woke up that morning, it would be one of the worst days of my life. Jodi called me from college and told me she was sick, so I took her to the doctor. I thought the doctor would prescribe something that would solve the problem. I was never so wrong. Our family doctor sent us to a Kidney specialist in Youngstown, OH. He is a nephrologist named Dr. Roberto Bacani. This doctor has saved my daughter's life many times over. he has commonsense, intelligence and a strong bond with Jodi that has lasted all these years. When Jodi is ill I have complete faith in any decision he makes for her. When Jodi first got sick, she was in the hospital for almost 3 months. I had 3 other children to worry about, and I had to work and run a house. Everything is in total turmoil and you run on fear for your child's life. I had a wonderful, supportive family and friends especially Mike, Don and Tina. Many nights they drove me to the hospital. It was 25 miles one way and they didn't want me to go alone.  I wish I had kept a daily journal because you tend to forget the times you don't want to remember.

Like sitting in a surgery waiting room for hours, praying the doctor will solve all your problems and knowing he won't.  Or the time spent in a car going to and from the hospital using your time to cry because you hated leaving someone you love alone and scared.  How about the times I lay awake at night listening for her to call or seeing her get up early to drive to Slippery Rock College which is 25 miles one way in the snow and ice with legs so swollen she could hardly walk.  She wanted her teaching degree and she got it.

I told her that she was my hero once, and she was surprised.  But, I also have another hero, and that is my youngest daughter, Tina.  She gave Jodi her kidney.  She is such an unselfish person.  It broke my heart to see her go under surgery, and know that she has only one kidney now.  Tina is doing fine.

Jodi has come a long way, and matured into a beautiful person who is a lover of life.  She lives alone and takes care of herself and her dog "Puddy".  Although she is on the machine, she is healthier than I have ever seen her.  I could go on forever, but I'm done remembering.  I'm a worrier.  It's a lousy job, but someone has to do it.

Love, Mom

Questions?

Hey friends,

Leave me your comments or questions, and I will be glad to answer them on future posts.  Did you know there is no such thing as a stupid question?  It's debatable.

Always your friend, Jodi

Thought for the Day

If God had a refrigerator, your picture would be on it.

If He had a wallet,  your photo would be in it.

He sends you flowers every spring.

He sends you a sunrise every morning.

Whenever you want to talk, He listens.

He can live anywhere in the universe, but he chose...your heart.

Face it, friend - He is crazy about you!

A hundred hugs & a thousand kisses...Jodi

Star Fruit Advisory

Danger!!!

Star fruit or Carambola should not be eaten by anyone on dialysis!

Star fruit contains a toxin that causes:  mental confusion, seizures, hiccups, insomnia, and even death.

Several investigators have reported star fruit intoxication's in patients with chronic renal failure and end stage renal disease.  Studies suggest a neurotoxin may exist in star fruit which can be accumulated in the blood and cause irreversible damage.  The unknown toxin has been found to be non-removable by hemodialysis.

Symptoms may vary and include insomnia, uncontrollable hiccups, agitation, muscle weakness, mental confusion, seizures and cardio-respiratory arrest.  Death has been reported in patients who have eaten one to two fresh fruits.

Because there is no effective treatment, patients with chronic renal failure and end stage renal disease must be warned NOT TO EAT STAR FRUIT...EVEN IN SMALL AMOUNTS!

Chapter 2

My Dad owned a grocery store and butcher shop.  It was fun growing up above a store.  We lived upstairs and the store was downstairs.  We always had fun things to eat.  Candy, pop, chips, ice cream.  We loved Pepsi.  Man, we couldn't get enough of the stuff.  Pepsi and Snyder's potato chips went good together.  

My Dad's sister, Aunt MaryRose, worked in the store too.  She was like an older sister, and always made things fun for us kids.  She did a lot of dumb things and got in trouble most days.  Getting in trouble with my Dad was no picnic.

One day she weighed my little sister (who wasn't so little) on the meat scale and broke it.  My Dad had a fit and made her pay for it out of her meager wages.  Another time she was painting buggies with silver paint, and it somehow ended up all over my brother, Donnie.  He looked like the tin man from The Wizard of OZ.

Another time MaryRose got really scared when a customer came in with a towel covering his hand.  She thought he had a gun, and when Daddy pulled the towel away it was a hook hand.  Poor guy was so embarrassed.  My Dad wanted to kill her.

Yet another time MaryRose got the shock of her life when she came face to face with a raccoon that was under the counter eating cigarettes.  My Aunt can scream louder than anyone in our family.  My Grandmother was a good screamer too.  We found that out when a giant sewer rat joined us for Thanksgiving dinner, but that's a whole other story.

My childhood was so fun.  My best friend was Carol Gardner.  She taught me everything.  How to play jacks, Chinese jump rope, hopscotch, canasta, badminton, croquet, mother-may-I, Simon says, rollerskates, pickup sticks, all kinds of stuff.  Carol was the best.

I remember wanting a hoola-hoop.  One of the best memories I have of my father was when he drove me all around looking for one.  He took me in his brand new big, green 98 Olds with push button windows.  What a car.  it took a long time, but we finally found a shoop-shoop hoola-hoop at Gaylord's.  It had beans in it, and make a cool noise.  It was hot pink, an no one else had one like it.  I was in my glory.  Thanks Daddy.

Us kids could play outside all day, but we had to be home before that streetlights came on.  If we didn't make it, my Mom was on that back porch screaming, "Michael, Donnie, Jodi, Tina!"

People never bothered us back then.  I'm sure there were lots of perverts around but they knew better than to come near us.  My father could easily castrate them in the back where the meat room was.

It's funny they never called them pedophiles.  My Aunt called them dirty old men, and she could spot them a mile away.  And just like my Dad, don't even think about coming near a loved one.  she will eat you up and spit you out.  She's kind a like Janice from the Sopranos.  Know what I mean?  

Anyhoo , I had a great childhood growing up at the store.  (Hi Aunt Mary Rose)

So much more to come......

Tylenol and Benedril Cocktail

Hello Dialysis Friends,

When I arrived at dialysis this morning something was wrong because all of the patients were sitting in the waiting room.  Not a good sign.  The Bicarb was messed up, so they had to mix new jugs of the stuff before we could get on.  Usually we start getting on around 5:30 am.  Today I got on about 10 min to 7 am.  That's okay.  Things happen.

My arm is working really good today since they put in the new stint.  I was so tired last night from all the excitement, I took 2 Tylenol and 2 Benedril and went to bed.  I feel much better, but i'm still a little sleepy.  I'll catch up on the weekend.  So, how were your treatments this week?

A hundred hugs & a thousand kisses, Jodi

Arm Stuff

I have good news about my arm.  Yesterday they were able to place a stint in my graft and strengthen the vein so I can get some more time out of it.  It was a rough day.  I'm really beat today and a tad bit sore, but I went to work.

I work at Curves, an exercise club for women.  Love my job.  Love, love, love my Ladies.  Hey girls, you HOT THANGS!!!

Anyhoo,  I was on the table for 3 hours.  First they took pictures of my right arm.  I'm shocked they got an IV started, because I have no veins.  (Thanks Eileen!)  Second they took pictures of my left arm.  During that procedure the machine went on the blink, so they called a repairman.  Finally they started the angioplasty and the doctor decided to put the stint in.  Things were going great until I got light-headed and almost passed out.  (Sorry Kathy).

After that, things went pretty smooth and next thing I knew I was eating a turkey sandwich and chocolate pudding.  Friday we will use the arm for dialysis, and hopefully it wont hurt anymore.  Okay......that's a wrap!

Prayer Power

Prayer is the spiritual communication between ourselves and the divine.  It is impossible to pray without living faith in the presence of God.  Praying are our souls sending "knee-mail".  When a prayer is created on Earth, actions begin in heaven.  For prayers to be heard, we must listen.  Are we speaking too much, that we do not hear?  The most important line in the Lord's Prayer is, "Thy will be done."  Say this with surrender, and peace will fill you.

It is written that Jesus rose early every moring and went off by himself to pray.  We remember his final cry, "My God, My God, why hast thou forsaken me?"  How many of us have uttered the same?

The 23rd Psalm always comforts me.  It begins, "The Lord is my shepherd I shall not want..."  ending with "...Yea thou I walk through the valley of death, I fear no evil for thou are with me."  We've all been there, and what a beautiful way to consider our own mortality.

Daily, I pray this prayer that sits on my nightstand.  "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."  Because god clearly hears the cries of the heart; the fewer the words, the better the prayer.  Ben Franklin once said, "Work as if you were to live 100 years, Pray as if you were to die tomorrow."  In conclusion we pray, "O heavenly Father, protect and bless all things that have breath; guard them from all evil, and let them sleep in peace."

In Memory of Ron Thomas, Jodi

Arm Update

A little quickie....

Going to the hospital tomorrow.  Not really sure what they are going to do yet.  Could be an angioplasty or could be surgery for a new arm graft.

More to come...

Arm Graft Problem

Hello friends!

Oh boy.   Not good news.  Trouble in doggie-land.  The arm is on the blink.  After many years, it is ready to be replaced.  My Venus needle did not want to work today, so my treatment was cut short this morning.  Not good for a Monday, but I'll be okay.  

I'm getting ready to call my surgeon, so stay tuned.  To me, it looks and feels like I'm going to need a brand new arm graft.  I've had a total of 4 (in 27 years) in my left arm, and he says there is room for 1 more.  Having a good access makes dialysis so much easier, but when you don't it's a real big pain in the *** you know what.  

Well I better give the doc a call.  I'm procrastinating you know.  Do you do that?  Stay tuned, I'll let you know how it all plays out.  (Hi Mike!).

Bad Day

Hello my friends on dialysis.  Did you have a bad day today?  I did.

I got stuck 4 times this morning because my techs were evidently having a bad day too.

At least it's Friday, and I have an extra day to heal.  I'm sure I'll have purple bruises.  They take forever to go away.  If this happens to you post a comment.   I'd love to hear about it.  (Boo Hoo)

"Hey Misery, your Company is here!"

Anyhoo.  It's really not always the technicians fault.  (yeah right!)  I know that blaming someone always feels better, but sometimes we just have to suck it up, put on a little ice, and bitch to everyone we see....."Oh man...stupid techs...bad day....got stuck 4 times...bummer."

Let me know how many times you got stuck today.

A hundred hugs and a thousand kisses....your friend, Jodi

Tips on Longevity

Dr. Oliver Wendell Holmes once said, "The best way to ensure a long productive life is to have a chronic disease and take care of it."  An article was published last year featuring the success tips of patients who have used the machine 25 years or longer.  Here is a summary of that article and how they take care of their chronic disease.

1.  Attitude is everything.  Stave positive and optimistic.  Always remember, bad times will pass.

2.  Get smart.  Learn all you can about your body, your disease and your treatment.    Understand how the machine works.  Take control and stay informed.  Keep an updated medical history and a list of medications ready at all times.

3.  Don't keep secrets from your health care professionals.  They are not mind readers.  Report any changes in wellness immediately, and always follow Doctor's orders completely.

4.  Eat well, feel well and never miss taking your food binders.  Foods normally eaten with a spoon, use a fork instead.  In other words, watch the fluids.  Stay on the dry side of the road.

5.  Be active.  Move around.  Get fit and stay fit.  

6.  Dialyze as much as you can.  Don't ever shorten your treatment time.

7.  Replace tears with humor, surround yourself with great people and always keep a smile on your face.

8.  Get creative with your down time.  Find a hobby, take a class or learn the computer.  Remember, life goes on with dialysis.  Be sure to get a life and live it to the full.

9.  Establish a strong faith.  Think God, and thank Him for His many blessings.

10.  Read, "Dialysis - An Unanticipated Journey" by David Axtmann, a 32+ years Veteran of Hemo.  Know that you are not alone and that there are people everywhere with problems.

My favorite quote came from musician Eubie Blake who said, "If I'd have known I was gonna live this long, I'd have taken better care of myself."  This remark was made on his 100th birthday.  

A hundred hugs & a thousand kisses....your friend, Jodi

Why Worry?

We worry.  Worrying is something we do.  It's a way of life.  It consumes us like a great fire.  We worry about everything.  Our jobs.  Bills.  The weather.  Our children.  germs.  The dog.  Our hair.  Traffic.  War.  Prices.  The car.  Our weight.  The Boss.  Our spouse.  The IRS.  The end of the world.  The list goes on and on.  

We dialysis patients probable worry the most about our health.  This would be valid except that all the worrying in the world will never effect the outcome.  Worrying wastes time and doesn't produce anything but more worry.  Worrying will not add one more hour to your life, but instead will steal precious minutes from everyday.  Worrying instantly transports you to another day that you are not prepared for.  This being a day that may never come.  

More than anything, worry insults God.  It clearly says, "I don't trust you, you can't handle this."  God provides on a daily basis.  Why would God teach you to walk, just to watch you fall?  Take one day at a time, one step at a time.  Psalm 91:11-12 states:  "He has put angels in charge of you to watch over you wherever you go.  They will lift you up in their hands so that you will not strike your foot against a stone."  Free yourself of worthless worry.  Don't fret, for He is worthy of our trust.

A hundred hugs & a thousand kisses.....Your friend, Jodi

Survivor

I get a kick out of the TV show Survivor.  The object of the game is to be the last remaining person on a deserted island, and the payoff is one million dollars.

To survive means to keep going, persist, carry on, outlast, stay afloat, pull through, endure, tough it out, persevere.  What does it mean to persevere?  To persevere means to continue in a state of grace until it is succeeded by a state of glory.  

In the real world, we see all kinds of survivors.  We have seen survivors of war, cancer, abuse, the Holocaust, 9-11 and the list goes on.  Proudly, I say we are survivors too.  I see good people with a common link arriving regularly to their dialysis units.  Taking meds, monitoring diets, giving blood work, having surgeries, fighting battles and winning wars.  It's a daily struggle.

I heard a story about a terribly troubled Mom who had lost her badly battered daughter to an abusive husband.  The mother sought help from a spiritual medium, who was able to contact the daughter beyond the grave.  the mother only wanted to know if she had suffered badly at the bitter end.  The medium was able to retrieve an answer which provided the mother with peace and closure.  the daughter replied, "Tell my mother that living is hard and dying is easy."

Wow!  Is that profound or what?

As dialysis patients, we prove each day that living IS HARD.  Still we persevere.  Keep pushing, hang on and grasp every priceless breath.  This is our payoff.  We are the ultimate SURVIVORS!

A hundred hugs & a thousand kisses...your friend, Jodi

My Story Ch. 1

On April 28, 1961 my mom pushed me out into the cold cruel world.  Right away my father didn't want me because I had carrot colored hair.  He really wanted another Son to help in the family grocery business.  After a few days I'm told he fell madly in love with me and decided to keep me.  Story of my life.... You gotta know me to love me!  Anyhoo, my Dad thought I hung the moon, red hair and all.

I have two older brothers (Hi Mike & Donnie!) that were always getting into trouble, and two years after me, my little sister (Hi Tina!) came along.  There were four of us rug rats, all two years apart.  My poor mother.  My mother is Irish-Catholic (Hi Mom!), my father was full-blooded Italian.  When worlds collide...

Anyhoo, I grew up like most kids in the sixties.  We made our own fun.  We played outside, beat each other up, and called each other names like "big fat pig".  It was great.  We loved each other very much, and still do.

My father was the kind of guy that would make you disappear if you harmed a hair on a loved one's head.  He was a hungry lion.  Nobody anywhere messed with him.  He had no fear.  He was the bravest toughest man I've ever known to this day.

One time some drifters rented a house on the next street.  They dog napped our St. Bernard, "Queenie", and tried to hold him ransom for $50 bucks.  That was a sorry day for them.

Another time some burglars tried to rob our store.  That was a sorry day for them.  

A lot of people that tried to mess with my dad had sorry days.

If his temper flared and he bit down on his finger, us kids knew to run for our lives.

What do you do when a hungry lion lives in the house?  You keep him well fed.  Weeeell FED.

to be continued........

Do's & Don'ts For People With Disease

Don't spend your lifetime trying to cure your disease.

Do Manage your disease, on the side.

Don't let your illness become your identity.

Do get into the habit of being a person instead of a patient.

Don't use your disease as a scapegoat.

Do everything you can not to let your disease consume you.

Don't succumb to your disease.

Do seek a higher quality of life.

Don't poison significant others with your disease and make them sick too.

Do pull yourself out of your illness.

Don't allow your illness to dominate your life.

Do live comfortably with it.

Don't dwell on it for hours and hours.

Do fill your life with more interesting things to do.

Don't allow your disease to become anymore infectious than it has to be.

Do control your disease...and...your live!

Don't waste anytime.

Do, do it today...

A hundred hugs & a thousand kisses.....your friend, Jodi 

Life is Like A Box of Chocolates...

"Life is like a box of chocolates."  Forest Gump was right.  You never know what you are going to get.  I never thought at the age of 19 I would get sick.  I never thought I would spend the rest of my days depending on a machine to survive.  Well here it is 2008.  Twenty-seven years have passed.  I'm 47 years old now, and I've only got a hundred years to live.  My friends, I want you to know, you are not alone.  I've been thought the fire, and now it's time to share.

I have sat for thousands of hours in my chair, hooked to my machine.  This is my time.  No one can interrupt it, or take it away.  It's all mine.  I'm sure in this busy world, many people would kill to have some 'my time'.  

My time consists of four hours of just hanging out.  I bring a snack and watch TV.  I love old movies.  I read a lot, and write this blog.  Sometimes I listen to music or talk on my cellphone.  I paint my fingernails and toenails.  I love to gossip and goof around with my fellow dialysis buddies. A lot of times, I just tilt my head back, and take a nice snooze.  At some point during my treatment I organize my thoughts and my day.  

Most days I solve all the worlds problems.  (Dialysis makes you smarter.)  Always, I talk to God, and he talks to me.  Most of the things you can do at home, are things you can do while sitting on dialysis.  That time is your time.  You have a great excuse to sit back and relax.  Do not sit in that chair and watch the clock.  I learned a long time ago those hands refuse to move when you are staring at them.

Remember, this is your time.  It's for you and the good health of your body and blood.  Don't piss it away.  There, I made a pun for those of us who can't pee.  I love the old Spanish proverb, "How beautiful it is to do nothing, and then rest afterward."

A hundred hugs and a thousand kisses.....your friend, Jodi