Sunday, November 28, 2004


Good Morning.  It's a rainy Sunday morning.  I'm fighting off a head cold.  But otherwise I am in good spirits.  Life is good here.  Before I get out of bed each day I make sure to speak to The Lord and ask Him to guide my day.  To watch over my family.  I as Him for His will in my day and in the lives of those I love.  It's much easier in my life that way.  Just to give over my day to God.  I'm not saying that I still don't worry.  But, it's becoming easier and easier not to.  I'm not saying that my life still doesn't have problems.  But it's so simple to put my trust in Him to make sure things turn out the way He has planned them for my life.

Ezekiel 18 31-32
Cast away from you all your transgressions, whereby ye have transgressed; and make you a new heart and a new spirit: for why will ye die, O house of Israel?  For I have no pleasure in the death of him that dieth, saith the Lord GOD: wherefore turn yourselves, and live ye.

Wednesday, November 24, 2004


Sorry everyone!  I haven't been keeping up with other journals much lately.  And, I haven't been writing in mine either.  I haven't abandoned you, just been quiet lately.  Also, Mom is here and I have been trying to spend some time with her.  It's hard to do both.  It's hard to keep up with life on both fronts.  Please forgive me.  I'm not trying to neglect anyone's journal.  I will read when things calm down I promise.  In the mean time..... to all my friends in JLand......... Love you bunches........... LuAnne

Saturday, November 20, 2004


Hebrews 11:1
 Now faith is the substance of things hoped for, the evidence of things not seen.

Friday, November 19, 2004

Even though

Even though I wish I didn't have to I need to go lay down.  My head feels like it's going to explode.  There goes my plans to attend the Ladies Fellowship Thanksgiving Dinner tonight at Church.  Maybe if I am able to fall asleep I will wake up feeling better.  But I don't know about it because I can feel it coming on.  My body is starting to feel spastic.  I am so unhappy.

Why art thou cast down, O my soul? And why art thou disquieted within me? Hope in God. For I shall yet praise him, who is the health of my countenance, and my God. Psalm 43:5


Today is Friday and I had big plans for myself.  Well, nothing really exciting. I was hoping to go to the Ladies Fellowship Thanksgiving Dinner at my Church tonight.  I don't know if I am going to make it.  It started on Thursday morning but I ignored the symptoms.  I went to the Coumadin Center to get my INR levels checked and they were high.  It was the prednisone they told me.  No problem they adjusted my coumadin levels and I am to go back in 8 days.  Still I am ignoring the symptoms because I want to feel good.  (But I can feel the heavyheaded feeling coming, the confusion is starting.) I get to my neuro.  While waiting for her to come into the examing room I begin crying and twitching.  She walks into the room.    After everything calms down she examines me. Ahhhh, Haaaa, she says, in her adorable Russian accent.  Now I see, something is off. My reflexes are not right. I cannot walk right. She finally sees my seizure in action.  My blood work shows that she cannot increase my seizure meds.  She wants me to see the Head of the Epilepsy Center at the hospital to see if he can recommend different meds.  She makes the referral.  We talk about a SPECT Scan and a lumbar puncture.  We agree to do a scan first and then if warranted a puncture later.  A puncture is to invasive.  Especially since I am on coumadin. Too much prep.  We talk about APS and how I have read that how if a person is on coumadin that symptoms should disappear.  She tells me that this doesn't happen all the time.  She tells me that I have to understand that APS is a relatively obsecure disorder and that there is not much known about. (Like I haven't read all of this)   It's only been known about since the late 1980's.  She told me to look at it like this.... A diabetic and insulin........ sometimes it works....... sometimes not.  Some diabetics have what is called insulin resistent diabetes.  Makes sense and makes me feel better and not like a crazy lunatic.   Of course she tells me to hang in there.  They all tell me to hang in there.  It's easy for them to say that.  It's not their brain that is slowly losing the ability to function.

Well anyway, my brain is hurting this morning.  Last night while trying to do my meds with my husband I just lost it.  I could not concentrate.  I could not remember what was what.  I sat there looking at all those pill bottles and drew a total blank.  I just started crying.  It's such a scary thing to not know. 

Monday, November 15, 2004


      Question 1:
      If you knew a woman who was pregnant, who had 8 kids already, three who were deaf, two who were blind,  one mentally retarded, and she had syphilis, would you recommend that she have an abortion?
      Read the next question before looking at the response for this one.
      Question 2:
      It is time to elect a new world leader, and only your vote counts. Here are the facts about the three candidates.
      Candidate A.
      Associates with crooked politicians, and consults with astrologist. He's had two mistresses. He also chain smokes and drinks 8 to 10 martinis a day.
      Candidate B.
      He was kicked out of office twice, sleeps until noon, used opium in college and drinks a quart of whiskey every evening.
      Candidate C.
      He is a decorated war hero. He's a vegetarian, doesn't smoke, drinks an occasional beer and never cheated on his wife. Which of these candidates would be your choice? Decide first... no peeking, then scroll down for the response.
      Candidate A is Franklin D. Roosevelt.
     Candidate B is Winston Churchill.
      Candidate C is Adolph Hitler.
      And, by the way, on your answer to the abortion question: If you said
        YES, you just killed Beethoven.
      Pretty interesting isn't it?      


There are many obstacles in our lives that cause us to fall short of what we think we are supposed to be. These obstacles cause us to stumble and slip. Lately many things have caused me to look at the bumps in my life.  There are many. So many things cause hindrances in my existence.  For one my difficulty with change.  Several things have changed in my life during the past few years.  Some of them have been through no fault of my own.  And, some of them have been because I could not deal with these changes. It has caused me difficulty.  That has been an hindrance and encumbrance in my life.  I was holding on to the past.  I was trying to make things stay the way they were before I got sick.  It was an arduous task.  Which cost me more than I sort to gain.  I was always facing a strenous uphill and rough journey.  My life was labored.  Every moment was effortful.  I needed to accept that I had to go on with my life.  I was carrying around too much.  I needed to drop any heavy bagage I was carrying and run unemcumbered toward a bright future.  But how?

I was sick, there was nothing that "I" could do about that.  I was looking for my support in all the wrong places.  I was placing my trust in all the wrong places.  I know that I am still new at all of this and that I have so much to learn.  But  what I do know is that I don't have to do this alone. 

"I am still not all I should be, but I am focusing all my energies on this one thing: Forgetting the past and looking forward to what lies ahead, I strain to reach the end of the race and recieve the prize for which God through Christ Jesus, is calling us up to heaven."  Phillippans 3:13-14


Hope gives us courage

What can I do when things seem hopeless?

". . . Hannah was in deep anguish, crying bitterly as she prayed to the LORD . . . "

1 Samuel 1:1-28

In the midst of Hannah's hopelessness, she prayed to God, knowing that if any hope was to be found, it would be found in him.

Sunday, November 14, 2004


This morning after sleeping on the couch and being up and down most of the night because my son has his first "DJ" lighting tech job and was in the city.  And of course as any mother would do, I couldn't rest comfortably until he was safely home.  But when I got up I realized that I didn't have to throw my guts up.  My doctor had called in a prescription of compazine suppositories for me.  I used only one yesterday.  He gave me 6.  I woke up feeling pretty good.  Slightly nauseous but nothing like I was feeling for the past few days.  Decided to go to church and after that went to get my hair cut.  After this last flare its very very coarse.  But I am happy with the haircut.  Its a cute little bob.  Although I think I could use a dye job, but I will wait until my hair is a little less dry. I think the picture of me looks pretty good in comparision to the picture that I had of me a few weeks ago.  I'm not as swollen and my eyes look a lot better.  Well its time to go watch TV and hang out with the family.  Love and hugs Lu

Saturday, November 13, 2004


Well, the wonderful feeling was short lived.  No more joint and muscle aches, no more fatigue.  But I have been throwing up on and off since around 2 or 3 pm yesterday.  I have been able hold down some dry toast and some tea.  Which is a good thing because I need to keep my pills in.  I spoke to my doctor and he told me its just my body getting used to the CellCept again. I do remember this happening when I took it last time.  The doctor told me to call him as soon as my pharmacy opens and he will call in something to help with the nasuea.  Well, I told him..... you did say you wanted me to lose weight.  He laughed and said..... you are always joking.  At least you can keep your sense of humor.  I said.......... what else should I do.....???

I felt so bad for Gary when he got home from work yesterday.  He was so sad for me.  Because on Thursday I was all dressed and had energy like a ball of fire.  Yesterday I was in bed with a basin vomiting my guts up.  I am upset because my house is a disaster and I can't even muster up enough of anything to clean it.  The moment I move my head starts spinning.  Okay back to laying down for me.......

Friday, November 12, 2004

The death of Yasser Arafat

Arafat Buried in West Bank Amid Chaotic Scene Tens of Thousands Mob His Casket; Leaders Honor Palestinian Icon at Funeral in Egypt

Frantic mourners surged toward the tomb, trampling the olive tree saplings that were planted around the grave according to Islamic tradition. One policeman knelt on the marble and kissed the tombstone.

The article went on to say that mourners were heard to say...

As the coffin was carried toward the gravesite, police jumped on top of it, waved their arms and flashed the victory sign. People chanted, ''With our blood and our soul we will redeem you Yasser Arafat!''

''It is not what we expected,'' said Palestinian Cabinet minister Saeb Erekat, who traveled in the Egyptian military helicopter with Arafat's coffin. ''At the same time, we had to do the burial before sunset in Islamic tradition. ... I expected much better, more organized, but things got out of hand, unfortunately.''

To read the entire article please go to.......

Look at the chaos that is going on.  The blindness.  The Pastor at my Church has been talking about this for the past few weeks.  I don't pretend to know much about what is going on in the Middle East.  All I know that this blindness scares me.  I sit here a little speck of dust in a world of anger.  Following a God that has given his love to me.  He has given his promise to the nation of Israel...... (Please see... for the entire text of Mysteries of the Bible.....

The nation of Israel was God's witness of who He was to both the Jew and the Gentile nations. (see Deut. 28:37, 1 Kings 9:7, Psa. 44:14, Jer. 24:9, Eze. 22:4) When God called Abram (Abraham) in Genesis12:1-3 He promised him four specific things:

    1. Make of him a great nation. V2
    2. To bless him and make his name great.
    3. To be a blessing and to bless them that blessed Abram and curse them that cursed him.
    4. In Abram would all the nations of earth be blessed.

      a. These promises were made unconditionally by God.
      b. The promised "seed" is singular and means the seed referred to in Gen. 12:3 is Christ.
      c. V17...That the promise was fulfilled in Christ. Note is states the promise cannot be disannuled!                                                                                                                                                                                                                     
        I didn't mean for this to become my own personal soap box or a Bible Study, but I am beginning to get scared at what I see on the news lately.  The blindness is just mind boggling.


    Weekend Assignment #33: You can have any person, past or present, sing any song for you that you want. What is the song, and who is singing it for you?

    Extra credit: Name a singer you wish you could sing like, but can't. So that means even those of you with excellent voices have to pick someone you can't sing like.

    Remember, the idea behind the Weekend Assignment is to write it up in your own AOL Journal or other blog, and then come back here to leave a link to your entry in the comment thread. Anyone can do it!

    Oh, This is an easy one for me

    WHAT A WONDERFUL WORLD (Louis Armstrong)

    I see trees of green, red roses too
    I see them bloom for me and you
    And I think to myself, what a wonderful world

    I see skies of blue and clouds of white
    The bright blessed day, the dark sacred night
    And I think to myself, what a wonderful world

    The colours of the rainbow, so pretty in the sky
    Are also on the faces of people going by
    I see friends shakin' hands, sayin' "How do you do?"
    They're really saying "I love you"

    I hear babies cryin', I watch them grow
    They'll learn much more than I'll ever know
    And I think to myself, what a wonderful world
    Yes, I think to myself, what a wonderful world

    Oh yeah

    I've loved this song and have only heard it sung by him (actually recently I heard Rod Steward sing it ~ does sound good, but its not Louis) since I first heard it as a little girl.  I cannot quite remember the time or the place where I heard it first.  But this song has always been in my head.  It's the song that I sing when I used to get up at a karokee bar.  It's the song that I hum when I am doing dishes.  It's the song that always is in my head when things appear the darkest in my life.  The song shows me that there is hope.

    IS IT A WONDERFUL WORLD  I wrote about this in a past journal entry.


    That's an easy one........ I would want to sing like Carole King.  Carole's voice is so earthy and beautiful.  Her songs always reach my heart. From Tapestry to Slapwater Jack.  Not to mention the beauty of her piano playing.   He voice always soothes me.  You know what they say music always soothes the savage beast.  LOL

    Thursday, November 11, 2004


    Good evening, I am feeling so much better this evening.  It's amazing what 2 days on prednisione can do.  I also had a very nice appointment with my rheumatologist this afternoon.  His plan is to keep me on 20 mg of pred for another 2 weeks than 15 mg for 2 weeks then 10 for 2 weeks then 5  daily then get blood work return to see him in 6 weeks.  Also he is putting me back on CellCept.  But this time his plan is to increase it to 3000 mg daily.  He agrees that I was doing much better on this med and also need to have it increased.  He spoke to my PCP and  they both agreed that this was the best course of treatment.  He listened to me during my tears and calmed me down.  I am very happy with this doctor.  He has a very professional way about him.  He also has a very good sense of humor.  When I gave him all the pictures Gary took of me during this last flare.  He looked at them.  There were pictures of my rashes.  (Under my breasts and on my buttocks)  When he got to the pictures of my face he commented about  how swollen I looked.  Then he asked if he could keep them.  I said they were for his file.  He said, no I want them to throw darts at.  He said, all kidding aside.  I was surprised that you only called me once during all of this.  I told him that I didn't want to be a pain in the ass.  That I had a very bad experience with my past rheumatologist always telling me to go to the ER.  He told me to call whenever I felt like that.  He said by these pictures I see you were in real bad shape and you shouldn't have been suffering the way you were..  We could have fixed this sooner.  He made me promise to call sooner if this happens again.  I just love this guy.

    Thursday Morning

    It's been quite an arduous flare I am going through.  I have never been through a flare like this before.  This is taking so long to get through.  This is my second day on the prednisione and I think I may be feeling a little better.  I dunno.  I have some more energy.  This is true.  I have a rheumi appointment today.  Hopefully, I will get the benefits of the prednisione without the woes.  That's all I have to write right now.

    Wednesday, November 10, 2004

    Quiz, Prednisone and Access-A-Ride

    I copied this quiz from Jazz's Journal (see link below).  It seemed like a great quiz to take.  Makes you go HUMMMMMMMM when, as she says, things are rough........ Check out my answers.........

    Ok things are rough right now for me so its time for me to do a quick systems check... I invite you to take this quiz also just to see where you stand...

    1. Why do you wake up in the morning?  Because I am no longer sleeping

    2. What keeps you going?  The faith that God has something Glorious in store for me.

    3. Where does your joy come from?  See answer to #2

    4. Where do you find your strength?  See answer to #2

    5. What is your inspiration?  See answer to #2

    6. What brings you comfort?  See answer to #2

    7. How do you deal with your burdens?  I lift up my burdens to the Lord and let him deal with them.  Well, I try to do that.  I don't always accomplish that.  Because I don't always let go of everything.  I have to learn to "LET GO."

    when you know the answers to these questions you will be half way home....


    Anyway, today is the day Istart taking prednisione.  I wonder if by tonight I will be running around the village square killing innocent victims.  You know Dr. LuAnne and Miss Hyde.  I sincerely hope not because I really do need some relief from this agony.  Last night was my first night of insomnia in such a long time.I can't really even catch up on sleeping until later because I have 2 doctors appointments today.  "Ologists" I call them.  I could probably reschedule my Endocrinologist appointment. I really don't have anything new to talk to him about.  We can go over my labs on the phone if he finds anything he wants to talk about.  I have all my meds.  That one I could get an appointment next week.  I just have to look at my calendar and see what I have scheduled next week and what the kids have scheduled next week.  Because now that I am no longer driving I have to make sure my schedule coordinates with the other drivers in the house.  As soon as my Access-A-Ride Application is approved I can come and go as I please.  I figure I can make my appointments close to the time Gary gets out of work and he can pick me up.  So I only need a lift to the doctor's appointments.  That should work and it will be much cheaper than a taxi or a car service.  Each Access-A-Ride trip is only $1.50 I think.

    Just a little note to everyone who is sending me emails.  I just love them.  Thank you.  I love reading  your journals too.  They are really an inspiration to me as well.

    Try to have an amazing day.  I am going to try too.  Love bunches LuAnne








    The Journal Experience

    I have been checking out other journals lately.  And, I am going to try to share them as I go along my days.  Today I want to share a wonderful one.  Actually there are two from the same person. In her "All About Me" section it say........ 

    I am 31 yr old  mother of 2 kids whose sole existance is to land me in I'm better known as a free spirit,who loves Jazz..and a mean game of My policy is to laugh at and through life ,'Cause Lord knows its laughing at me....

    Both of her journals (her poetry journal is new) are wonderful.  I definitely recommend you read them.  She is amazing!!!!  I really enjoy reading her journal.  Hope you do too.

    Tuesday, November 9, 2004

    Welcome to My Life ~~ Can't They Find a Pill For the Fatigue?

    Okay, I gave in today.  After a long visit with my primary care doctor yesterday and a lenghty conversation with my rheumatologist today it was decided that I start prednisione.  I start it tomorrow morning.  I had been fighting it for a very long time.  I don't do well on prednisione at all.  Let's just say I become a Dr. Jeckel.  But my rheumi assured me that this low dosage (20mg) will be fine and I won't become a psycho.  He told me that it will help with how I have been feeling.  Ever since I have been out of the hospital I have been in and out of this flare.  The fatigue has been so horrible it has incapacitated me at times.  there have been days I haven't had the sufficient ability to move off the couch.  All of my spoons have been used up just waking up and washing my face and brushing my teeth.  The pain in my  joints and muscles is tormenting me.  I can no longer walk  right.  Always bumping into something.    I'm tired of all of this.  Hence, my giving in to prednisione.  The doctor assures me that this will work.  And, on Thursday we will talk about once again resuming the chemo drugs.  Apparently, they did more good than I thought they did.  That's another thing my primary care doc and I talked about during my appointment yesterday.  He told me "Lu, you are never going to feel the way you used to feel.  You may feel better than you feel now.  But you won't feel like you did 3 years ago. I'm sorry."  I said..........Nope....... 3 years ago I didn't have a care in the world...... I didn't have a pain in my body....... my hair wasn't falling out......... my face wasn't red and swollen...... my fingers weren't swollen........ I will never see those days again.  I'm trying to live with this.   I told him the hardest thing is the fatigue.  If there was just a pill for the fatigue.  Is there a pill for that.  Geez, I take 11 different kinds of meds some 2 times a day............. Can't they come up with one to help with the fatigue?????????????


    Sunday, November 7, 2004


    I have been receiving a lot of supportive emails since I once again made my journal public.  People telling me that I am strong, that I have fortitude or how awesome I am at managing my illness.  I have a secret to share....... I am not so incredible at this.

    There are so many times that my days are filled with terror.  Especially when my days are loaded with havoc and tubulence that's when I am most fearful. 

    I don't write about the times when I just sit and cry.  I cry about the things that are lost from my life.  My freedom, my career, my looks.  Depression comes with this illness to a certain extent.  And, yes it comes and goes.  Who wouldn't grieve about the loss of those things?  It would take a very emotionally strong individual not to.  I am somewhere in between.  I do the best with what I have.  That's another purpose of my journal.  To help me learn to adjust to all these new things in my life. 

    Friday, November 5, 2004

    This Song Has No Title

    This Song Has No Title

    Music by elton john
    Lyrics by bernie taupin
    Available on the album goodbye yellow brick road

    Tune me in to the wild side of life
    I’m an innocent young child sharp as a knife
    Take me to the garretts where the artists have died
    Show me the courtrooms where the judges have lied

    Let me drink deeply from the water and the wine
    Light coloured candles in dark dreary mines
    Look in the mirror and stare at myself
    And wonder if that’s really me on the shelf

    And each day I learn just a little bit more
    I don’t know why but I do know what for
    If we’re all going somewhere let’s get there soon
    Oh this song’s got no title just words and a tune

    Take me down alleys where the murders are done
    In a vast high powered rocket to the core of the sun
    Want to read books in the studies of men
    Born on the breeze and die on the wind

    If I was an artist who paints with his eyes
    I’d study my subject and silently cry
    Cry for my darkness to come down on me
    For confusion to carry on turning the wheel

    Thursday, November 4, 2004


    Confusion Noun

    1. Disorder resulting from a failure to behave predictably; "the army retreated in confusion".

    2. A mental state characterized by a lack of clear and orderly thought and behavior.

    3. A feeling of embarrassment that leaves you confused.

    4. A mistake that results from taking one thing to be another;

    A mental state characterized by bewilderment, emotional disturbance, lack of clear thinking, and perceptual disorientation "he changed his name in order to avoid confusion with the notorious outlaw



    The days are getting shorter now and the nights are longer.  That is how the seasons change.  Not only because we changed our clocks but because my physical body just cannot keep up anymore.  My stamina is still waning.  As the trees lose their leaves my strength weakens.  It's only a flare.  I know this.  But my patience is growing thin. I have developed an indifference to this thing called Lupus and APS.  It's negligence towards me still causes confusion.  I'm unhappy.  It's as if I am starting all over again in my illness because I don't know how to explain how I feel sometimes.  I do not know how to handle this chaos, clutter, disarray this illness has caused in my life.  It panics me.   My physical appearance is beginning to appear better but I still stumble with my thoughts.  The questions still come and there are no answers because no one wants to answer my questions over and over again.  I watch television or a movie with my family and the first thing they tell me is to be quiet because I ask the same thing over and over again.  We watched a show the other night.  It was about motorcycles.  We were more than half way through it when I finally realized that it was about 2 people building 2 motorcycles.  I just couldn't get it.  I can't even figure out the instructions sometimes on boxes of instant mashed potatos.  I have to have the receptionists at my doctors look at my appointments when I write them because I make mistakes.  Then sometimes I am fine.  Not for long, but I have moments.  I wonder sometimes if the moments I am fine will be gone for good sometimes.  I am sad.  People get angry at me.  Doctors don't see a way to fix me.  God does I know.  So, He is my only hope.  What a wonderful hope that is!!!!


    Wednesday, November 3, 2004


    LuAnne?  What the heck kind of name is LuAnne? I love it now. Just the thought of my name revokes visions of a little child craving a simple name. Oh why couldn't my parents  have named me Laura, Mary or even Elizabeth?  No they had to burden me with the given name of LuAnne.  Not only was I tall, gauky and ackward but my name was L U A N N E.  How much more could a child bare?  I hated the name.  My sister was Kathy and my brother was Joseph.  Simple and usual.

    I didn't realize it in my youth that my name wasn't part of my identity. ..........

    LuAnne means.....

    An inspired leader whos originality, creadivity and wisdom are applied tocreating practical solutions to "unsolvable'problems.  Humanitarian and idealistic your vision is to make the world a better place and y ou will work to this end.  Hard working and tenacious people admire you for your honesty and integrity.  You are a loved and loyal friend and partner.  You have the potential to achieve enormous success in the world.

    Female Warrior.

    Descripiton of Your First Name of LuAnne.......

    Although the name LuAnne creates idealism and the urge to help others, we emphasize that it limits your ersatility and scope, turning you to technical detailis.  This name, when combined with the last name, can frustrate happiness, contentment, and success, as well as cause health weaknesess in the nervous system, and elminations system.  (Geez, you think?)

    Your name of LuAnne creates a desire to be ofservice to others, but its practicallity and attention to detail restrict spontaneity.  This name creates much frustration, nervous tension, and personal unhappiness because you are not able to realize your amitions and ideals.  You desire your life to be orderly and systematized and you keep your surroundings need and tidy, buit others often see you as fussy over little things.  You are a patient person and you will work hard one step at a time to accomplish your endeavors,  You tend to be thorough in building a solid foundationof fact and logic, but are not incluned to pursue inspiration or creative expression as in music  or the arts.

    My Elf name is ........Nienna Oronar

    My Hobbit name is ....... Dimple chub-Bagains

    My Hubby calls me ...... The BaaBee (hence my screen name)

    My children call me ....... Mommy

    My Mom calls me ........ LuAnne

    My brother and sister in law call me ............ Lu or Babe

    Their children call me .......... Aunt LuAnne

    My friends call me .......... Lu

    My Dad called me .......... LuLu ..........  or Ugly No. 1 (affectionately)!

    What ever I am called it's what people see in me.  It's the replationship I have with them.  I love my names.  I love LuAnne as my name.  It's not what I am.  It's just one of my titles.  I have many.  I am wife, lover, mother, daugher, sister, aunt, niece, friend, neighbor, caregiver, helper, someone with lupus, listener, talker, citizen, needy, giving, loving, lacking, fulfilling, taking, restoring, I am everything and and I am nothing.  My inner soul is what I am.  My husband and childre are what I am. My life is what I am.  What I have done is what I am. 

    And out of the ground the LORD GOD formed every beast of the field, and every fowl of the air; and brought them unto Adam to see what he would call them: and whatsoever Adam called every living creature, that was the name there of.  Genesis 2:19

    Tuesday, November 2, 2004


    It's National Friendship Week.  I received this in an email I wanted to include it as my journal entry today instead of sending it out as a mass emailing. 

    Proud to be your Friend!
    Make sure you read all the way down to the last sentence, and don't skip ahead.

    I've learned....
    That life is like a roll of toilet paper. The closer it gets to the end, the faster it goes.

    I've learned....
    That we should be glad God doesn't give us everything we ask for.

    I've learned....
    That money doesn't buy class.

    I've learned....
    That it's those small daily happenings that make life so spectacular.

    I've learned...
    That under everyone's hard shell is someone who wants to be appreciated and loved.

    I've learned....
    That the Lord didn't do it all in one day. What makes me think I can?

    I've learned....
    That to ignore the facts does not change the facts.

    I've learned....
    That when you plan to get even with someone, you are only letting that person continue to hurt you.

    I've learned....
    That love, not time, heals all wounds.

    I've learned...
    That the easiest way for me to grow as a person is to surround myself with people smarter than I am.

    I've learned....
    That everyone you meet deserves to be greeted with a smile.

    I've learned....
    That there's nothing sweeter than sleeping with your babies and feeling their breath on your cheeks.

    I've learned....
    That no one is perfect until you fall in love with them.

    I've learned....
    That life is tough, but I'm tougher.

    I've learned...
    That opportunities are never lost; someone will take the ones you miss.

    I've learned....
    That when you harbor bitterness, happiness will dock elsewhere.

    I've learned...
    That I wish I could have told those I cared about that I love them one more time before they passed away.

    I've learned....
    That one should keep his words both soft and tender, because tomorrow he may have to eat them.

    I've learned....
    That a smile is an inexpensive way to improve your looks.

    I've learned....
    That I can't choose how I feel, but I can choose what I do about it.

    I've learned....
    That when your newly born child holds your little finger in his little fist, that you're hooked for life.

    I've learned....
    That everyone wants to live on top of the mountain, but all the happiness and growth occurs while you're climbing it.

    I've learned ...
    That it is best to give advice in only two circumstances; when it is requested and when it is a life threatening situation.

    I've learned....
    That the less time I have to work with, the more things I get done.

    I want you to know that I am proud to be your friend!

    Monday, November 1, 2004

    When I turned 40

    I wrote this when I was turning 40.  I just found it the other day when I was looking for something.  I thought it appropriate for my journal.

    As I approach a time in my life when there is a certainty of an end, I can't help but be in awe of my surroundings.  Thirty-nine is a cumulative age.  A bewilderment settles in.  What mattered last year, last month or even last week is of no importance.  Have I lost or gained patience?  Nor only do I ponder my life, but I also view other lives.  I cannot comprehend others complaints.  It is really tragic to view such trival aspects of life with panic.  Life is not as complicated as we would have it be.  We're born and we die.  What we do in between in our choice.  When we become anxious over traffic or the weather or some other occasion beyone our scope of control, we lose sight of love or the beauty of a cloud.  Death is tragic, but in death there is new life.  A life of memories and lessons which are always new and different for us all.  We remember and regret.  We take stock.

    As disturbing as it is, is it really worth distress when a child scores a 42 (or as rewarding whan a child scores an 80) on his citywide test? Does it imporve the quality of our life?  Maybe yes but not for long.  Should we even assume that the child's quality of life will be better for that score.  I think not.  Do we chance making our children as neurotic and anxious as we have become?  Do we want that resondibility?  Will our children have the same complaints as we have?  Will they also be in therapy?  Happiness of being, love of life, contentment that suely improves life's quality.

    Could it actually be nexessary to fight with the neighbors over stupid things?  Or with the people down the block, across the street or on the moon over the kids?  What do we gain? We lose do much more.  What's wrong with a smile, or a simple "hello", even when we have to do it first?  Is there a big score board toting the initiation of "hellos" or waves?  Me" 3 You: 2.  Who cares anyway?

    Maybe, I think, I have lost a little patience, but I have also gained some somewhere along my journey.  I'm allowed.  I'm thirty-nine, a full fledged, card carrying, honest-to-God adult person now.  We'll see what forty brings.  Much better stuff, I think.

    But right now and surely for forever, I love my husband and my children more than I could ever convey.  This I can be sure of.  Even though the love I have for Gary is not the same love of my past twenty-six year old self, it's pure and real.  I'm sure of him to always be there, to always be my care-giver, my lover and, most importantly, my friend.

    Maybe an end of life is somewhere, but what fun and joy I'll have getting there.  I can look to now and know that my life's quality is as excellent as I make it.

    Wow, I wrote that almost a decade ago.  Some of my thinking has changed.  I think I have matured even more than I thought I would from that time.  I'm sick now and I think somewhat differently now.  But not really that much differently.


    Lupus Awareness Month is officially over today.  Does that mean that we are no longer aware of lupus anymore?  I believe that I will always be aware of lupus.  Just look at me.  Go ahead take a look at the pictures of me.  Gary took these pictures of me after I finished throwing my guts up for no particular reason.  Except that my brains felt like they were squeezing in my head. And, that made me nausous as hell. Or was it that the pain my body experinces makes me sick to my stomach.  Let's see could it be that 11 meds taken when I am flaring in a stomach that is burning with acid churing beyond control makes me vomit.  It could be any one of these or all of them. This was about 2 or 3 weeks after I was discharged from the hospital.  This Remember I was exhibiting stroke like symptoms (confusion, disorientation, slurring words, falling, etc.) I don't know if you can see the rashes on my hands and arms clearly or the swelling of my hands.  Gary wouldn't let me put the pictures of my other body parts on here.  They are for my doctor to see.  I'm starting to feel a little better I think .... I try not to complain too much.  I feel bad speaking about it anymore.  It's not worth it anymore.  I just try to live with it.  The fatigue and the pain are part of my life now.  People ask me how I am and I just say fine now.  When I speak to anyone they never know how I am because I refuse to let my voice give in to my pain.  But this is my life with Lupus and Antiphisiploid Syndrome.  Maybe one day someone will come up with a way to figure out what to do to help.  But until then I wait.