Thursday, September 30, 2004


This survey is from TRACY. ( I COPIED IT FROM

You should really read Loretta's journal it is something else. She is really one talented writer.

"...Twenty QuestionsI got these questions from Danielle... check out her journal... it's amazing!  And I love this font of hers!

1: Grab the book nearest to you, turn to page 18, and find line 4. Write down what it says:

tudes, behaviors, lifestyles, and values, concerning women's sexuality, A (The Christian Woman's Guide To Sexuality ~ Debra Evans)

2: Stretch your left arm out as far as you can. What do you touch first?

The love seat in my living room.

3: What is the last thing you watched on TV? 

Judging Amy
4: WITHOUT LOOKING, guess what the time is:

     2:30 PM

5: Now look at the clock, what is the actual time?


6: With the exception of the computer, what can you hear?

    A fan, my husband playing a video game (he's off today), men working outside.

7: When did you last step outside?

This morning.

8: What are you wearing?

Sweat pants, tee shirt

9: Did you dream last night?

Don't remember

10: When did you last laugh?

Just before, I make Gary laugh all the time.  Thus I laugh too.

11: What is on the walls of the room you are in?

Grandma's Norman Rockwell and Hummel plate collection, Gary's Grandfather's painting of Thomas Jefferson's home, antique mirror, more antique plates, antique brass port hole and propeller and various ship collectibles.  And, of course my thimble collection in a shadow box. (It's a big room ~ living room and dining room combination.)

12: Seen anything weird lately?

Me!!!, do I count?

13: What are you thinking about right now?

Wondering if I am weird or not, LOL

14: What is the last film you saw?

Who remembers?  I always fall asleep 5 minutes into any thing.

15: If you became a multi-millionaire overnight, what would you buy first?

My own home.

16: Tell me something about you that I don't know:

I like to eat frosting out of the can.

17: If you could change one thing about the world, regardless of guilt or politics, what would you do?

Oh Geez, the pressure of an answer.  I have to get back to you on this.

18: Imagine your first child is a girl, what do you call her?

Autumn ~~ Gary wouldn't let me name Lauren Autumn

19: Imagine your first child is a boy, what do you call him?  I did name him what I wanted to.....Gary

20: If you could have one wish, what would it be?

Peace of mind


Many of the beautiful photos can be found here in my journal are from this site.  Photo courtesy of . It's a beautiful site with interesting pictures on it.  See the link under my favorite sites to the left.

Today I spent the day in the ER.  Didn't really want to go but it was something that had to be done.  I was experiencing severe lower left sided abdominal pain.  I got to the ER and they triaged me within 10 mintues.  Once they realized the extent of my pain they put me on a gurny and treated my pain immediately.  They know me at the hospital (they see me at least once a month due to Lupus related stuff and seizure crap) and know my medical condition well.  They also know that when my pain becomes too much to bare that I begin to seize.  They have experienced that and now know it is important to treat my pain without delay.   The nurse I had was amazing, she found the hidden vein.  Not many people are able to do that.  I have only one vein left and she found it.  She was my favorite person yesterday and I made her aware of it.  I was put on fluids, given a shot of morphine, IV push.  Once that hit me I didn't know if it helped the pain or if I didn't care if I had pain any longer.  I was poked and prodded and wheeled here and there for tests.  They poked, I screamed.  They prodded I cried.  They apolozied.  All in all it was a harrowing experience.  Abdominal pain similiar to labor pains but constant.  Another shot of morphine because the doctor tells me that the diverticulosis is acting up.  The conversation goes like this now...Now remember I have just received a second shot of morphine....

Doctor.......... When was your last colonoscopy?

Me.................. June

Doctor.......... What did they find?

Me................... A whole bunch of crap and nothing.

Doctor........... What does that mean?

Me................... I have irritation because of the coumadin I take, the diverticular was okay, not too bad. I was told to eat fiber, psyllium.

Doctor........... Who did it?

Me................... Dr. Mancino

Doctor............. Okay............Follow up with him, your surgeon and your PCP, I'll give you antibiotics, and something for your pain. What do you usually take for pain?

Me.................... Morphine is good. Anyone else you think I should follow up with?

Doctor...............(Who looks at me strangly)

Me.......................I'm kidding, I take tylenol 4

Doctor.................Okay, the nurse will be right back to take out your IV and give you your discharge orders.

Me....................... You should laugh more. Laughing is a good thing.

The nurse comes in with my D/C orders and my scripts.  Cipro, Flagyl and Tylenol 4.  I fill none of them.


I follow up with the surgeon later that evening......

He checks my surgery site............Everything looks good.  The mesh has not moved.  Nothing wrong.  What's going on with the diverticulitis.  I say, Heck if I know.  We go through the whole colonoscopy script again.  He asks what I am taking for pain management.  I tell him right now ......... percocette.  He tells me that sometimes this pain can come from a herniated disk in the spin.  Let's do a lumbar MRI.  I say okay.  We talk a while about me and my other health problems.  We walk out of the room.  (Gary is with us.) I have to fill out some paper work. and I'm having trouble doing that.  I have a hard time.  Dr. Sabido says next time take 1/2 a perc.  I say oh you think its the med that is making me have problems.  Gary chimes in......... She is like this all the time.  He frowns and says....... "This is from the Lupus and the Antiphisiploid Syndrome?" I say, yup.  He puts one arm around me and tilts his head.  I smile.  He says he will call me with the results of the spinal MRI.  I guess he understands now about my auto immune disorders.  Maybe he will go home and read about it.  Maybe he should have done that before he operated on me.  Might have made him a little less arrogant.


Wednesday, September 29, 2004



M    is for the million things she gave me

O     means that she’s growing old

T     is for the tears she shed to save me

H    is her heart of purest gold

E     is for her eyes, with love-light shining

R    Means right and right she’ll always be Put them all together, they spell MOTHER!

A word that means the world me.                     Howard Johnson


Could you imagine growing up not having an amazing mother?  I couldn't.  Because I have one.  Mymother is loving, kind and compassionate.  It never fails to astound me how she can know by just the sound of my voice how I am feeling.  It must be the "Motherly Thing!"  I never believed in that before I was a mother.  I believe it now.  Because I can sense it with my own children.  My mother has taught me well.  She has taught me by example.  My mother is a kindhearted, tolerant and forbearing woman.  She is good-natured, sweet-tempered, and openhearted.  There is not a malicious bone in her body.  She is the most wonderful woman I know.  If I can be half the woman she is I will count myself  fortunate.  I know that sometimes I do things that she does not like.  We all make mistakes.  I know I have made some.  I also think that in many ways I am very much like my mother.  I think a lot like her.  We clean the same way and do many things the same. There is not a person who does not like my mother.  I love my mother dearly.  Don't get me wrong there are times when we can butt heads.  I find this happens because we are very much alike.  Maybe because we are two woman share one kitchen when she is in NY.  Maybe because we are two sensitive woman.  Maybe because we are two woman who are used to doing things are own way.  Or simply because we are just two woman.  I can confide in my mother and she understands.  She has been through a lot in her life.  She loves her children dearly.  And, they love her too.  Mom is tender, merciful, but most important she is "Saved."  She loves Jesus and prays for my salvation.  And, for that I will be forever thankful.  She has not given up on me.  She knows my short comings and loves me in spite of them.  She knows Jesus loves me in spite of them as well.  Thank you Mom for all you have done for me throughout my life.  I love you so much! You are what has made me the woman I am today.  I appreciate you so very much.  I think  you are so wonderful.


"Life began with waking up and loving my mother's face." —George Eliot


"A mother understands what a child does not say." --Jewish Proverb



Edith Sitwell:
I am not eccentric. It's just that I am more alive than most people. I am an unpopular electric eel set in a pond of goldfish.

Sounds good to me.  Webster defines eccentric as:

1 a : deviating from an established or usual pattern or style b : deviating from conventional or accepted usage or conduct especially in odd or whimsical ways
synonym see STRANGE

I am me.  Always have been me.  Strange, maybe.  Who cares really?  Weird, who knows?  I surely don't.  Remember, I'm a changeling, a Pure Angel.  The quizzes don't lie, right?  LOL  I have always "Walked to the beat of a different drummer!"  I particularly like the part of the quote that says that she is an unpopular electric eel set in a pond of goldfish.  Sounds a bit like me.  Not really as harsh as it reads, but basically true.  I'm not in attack mode like the electric eel.  But, I do stand out, that is right.  I can start a conversation with just about anyone.  Yup, ..........that's where the weird thing comes in (or the Pure Angel, however you choose to look at it).  I don't think its weird, others do.  Have always been like that.  As a little girl Mom says I would start conversations with people in Bohax.  Offering Little Old Ladies rides home in my Mother's car.  Just always stood out.  As a teenager they called me "Dumb Bunny!" Nah, I wasn't really.  Just chose my fights.  Just felt things weren't important enough to worry about.  I knew the deal, I knew who was who and what was what.  I wasn't as naive as they thought I was.     Wore clothing that was different.  Never wanted to wear a bra, shoes or anything that made me unconfortable.  I stood out.  My hair was very blonde.  My eyes were very big.  I looked at the world with wonder.  I remember standing on the corner of Flatlands Avenue and East 53rd.  It was this vast intersection.  Well, it was to me then.  You had to run across lanes of traffic to get across.  It seems like forever to get across that intersection.  There was this little island of concret situated in the middle of the vastness of the intersection.  Where you could stand if you didn't make it across traffic.  I remember just standing there waiting for the traffic to slow down.  That was the place I would stand while going to anywhere.  Yup, I stood out.  I did stand out. I do stand out. 


Tuesday, September 28, 2004


Congrats! Your a Pure Angel! Angels, as far as most of them go, are all compatabile creatures, but Pure ones simply are symbols of God. Pure Angels always appear when a child is born, when a rainbow is seen, or when someone shares their first kiss. They never grow old, an can appear in the shape of a naked woman with white, bold wings. Pure angels are the carriers of god, and show their love to everyone in the world.

This quiz stuff is so cool......  I like being a Pure Angel today. Check out the entire website. (See link below) You can take so many different types of quizzes.

Category X - The Changeling

The Changeling
Category X - The Changeling
Witty, amusing and a bit weird, you're welcomed into most social groups, even though you don't 'fit in' perfectly .

This was so cool.  And, so true........;jsessionid=E2384FA796DD6E8FC4201E15EE116630

Sunday, September 26, 2004

Brain Cells

Today was my first appointment with the Neuropsychologist.    I must say that it was a very interesting appointment.  Dr. Weiss was very nice.  He was basically the same age as me.   Give or take a few  years.  After we went over my medical history (which baffled him ~~ as it does everyone) we began the first part of the testing.  He asked me to name some words that began with the letter A.  Not such an easy task.  No names.  Just words.  I think I called out 4.  Maybe 5.  Not more than that.  Then he asked for words that began with the letter F.  Again I couldn't think.  I maybe got 4.  He asked me to name words that began with the letter S.  I did better this time.  Blurted out a bunch of S words.  More than 5.  He said I just made "Normal" because I said a bunch of "S" words.  LOL So I am normal because I know a lot of "S" words.  Little does he know I just looked around the room and saw a lot of S things.  oh well.  Next he gave me a paper to fill out.  It had a lot of questions about how I felt.  I answered them.  He told me I am moderately depressed.  I don't need a questionnaire to tell me that.  He told me that is understandable considering all I have been through.  It comes and goes.  When things get hard to handle and my shoulders are too feable to ferry the burdens.  I feel sad.  That's really all that's going on.  I don't think its really depression.  I have to go back to finish the test in four more sessions.  Then we will know exactly how many brain cells I have lost.  Wonder how many?

Wednesday, September 22, 2004




 Life is a beach and either we sink or we swim. Such is the life of a Lupie every day is an adventure.  We wake up and examine what is going to happen each day.  Screw that one day at a time theory if you have to.  Try one hour at a time.  Especially if you are living with some sort of chronic illness like Lupus.  You never know what is going to happen when you lift your head off of the pillow in the morning.  Or if you even are able to get your head on that pillow. For some the pillow doesn't even come into play.  Chronic insomnia is so real.  I am lucky I don't have that.  I just sleep and sleep.  So for me knowing my life is knowing that I just sleep a lot. Therefore, I work my life around that.  Find out what works for your life and work around it.



For me as I said in Part I, I live my life around my sleeping schedule.  No way around it.  I do what I have to do around my fatigue and pain.  Some days its better some days its worse.  I take them one day at a time or one hour at a time.  Depends on the situation. 

 WORK WITH YOUR LIFE.  Work with what you have.  Not with what you had, or what with what you wish you had.  Not with what you have lost.



Playing the numbers game....... It's interesting to play the numbers game.  For me playing the numbers game means a whole bunch of different things.  On Sunday nights it means counting out my pills.  I can no longer do this alone.  I need assistance.  Otherwise, I put too much of one pill and not enough of another in the little cubbies of my pill box.  Playing the numbers game also means that I have to calculate and recalculate everything I do no matter what it is.  Because if I don't I am lost beyond belief and I don't know which way is up.


Yup, making the presentations...... just making the the presentations.  Living your life as if nothing is wrong.  How hard is that?  Well, its pretty hard.  People want you the way they want you.  They want you the way you used to be.  I have a bulletin for them.  Sorry but it ain't gonna happen.  Nuff said on this subject!


Yeah right, like that might happen.  Just try to write things down.  And keep a calendar.  I lose things and they are just gone.  When making doctor appointments write them down and show it to the receptionist to confirm that I have written the right thing on the right date.  I dunno any other way to keep organized.  I use AOL's nifty "Remind Me" feature.  Otherwise I am always lost. Like the time they found me wandering around Pathmark.  Yeah, that was fun.


Nope can't do it.  Once I store stuff in my brain its gone forever.  Oh, sometimes it comes back but I never remember why I stored it in the first place........

So just be generous with your love and give bunches of hugs and youwill be fine........


Tuesday, September 21, 2004


People with good sense restrain their anger; they earn esteem by overlooking wrongs.

Avoiding a fight is a mark of honor; only fools insist on quarreling.  Proverbs 19:11;20:3


I hate roses, always did.  Daisies,  or sunflowers would do much better for me.  Even lillies or tulips would be better than roses.  I think roses are a selfish flower.  Very stuck up.  Yup, I'm more of a Sunflower Gal.  Those big yellow flowers blowing in the wind.  Not very fragile at all.  Roses need tending too.  Sunflowers are hardy.  They can take care of themselves.  Their tenacious stems withstand the strength of the wind.

Some people are roses and I hold my disdain for them in the same regard.  To be selfish and need to be tended to simply pisses me off.  I'm not saying that there aren't times when we need to be tended to.  I have had times (and they have been very recent times) where I have had the need to be tended to.  But not for selfish reasons.  Not because I am high maintenance.  Because I am sick, does anyone really get this?  I don't want to be sick, I don't want to be tended to.  I would much rather do things for myself.  I have done them for myself for  over the last 4 decades of my life and now I am unable to do the things I used to be able to do.  I don't like it.  But I refused to be the rose.   I am still the sunflower.  The big and bold sunflower.  STANDING TALL AND FACING THE SUN.  Even though I can't face the sun any longer.  I will never be the rose.  I will always be the SUNFLOWER!

Thursday, September 16, 2004


I'm yearning for a simplier life.  A life that is not obstructed with physician's appointments, blood tests and MRIs.  An existence that is not occupied with unraveling the medication puzzle that plaques me daily.  It's impossible for me to figure out how to do this.  Because I cannot impersonate the me of so many years ago.  Some of her still breathes within me.  Her wit, her charm, her love and her vigor live inside me.  But, unfortunately I have acquired new emotions.  And, at this point there is absolutely nothing I can do about them.  I ache both physically and emotionally.  My doctors confer regarding my physical pain.  They advise pain meds.  The customary ~~ the routine ~~ the "BIG GUN" meds.  I'm a "SCIENCE PROJECT" I have always known that.  Which brings me to the emotional sorrow I feel.  There is no comfort for me.  No one can offer me solace.  Maybe it's because no one understands.  Or maybe it's because I just don't hear their encouragement.  Whatever it is.  I am sad.  Not in the usual way.  I do manage to go through my life and get things done.  I just yearn for a simplier life.

Monday, September 6, 2004


Such is the life of a Lupie.  Days filled with indiscriminate responses to the energy that life doles out.  I have envisaged truth in my search through this life that I call......LuAnnne's Life Living With Lupus.

I have no way of knowing how each stream of sunshine through my window in the morning will secure the outcome of my day.  Will I awaken to a painfree, wonderful day?  Or will my day be lost, once again to Lupus?


Today, turned out to be one of those "Middle of the  Ground" days.  I found myself starting to get one of those abominable headaches today.  But, I made a quick judgement and called in the "Big Guns"  meds. Figured why wait? It worked!  Took the headache from a 8 to a 4 which is much more endurable.   And, as the day progressed it hovered somewhere between a 2 and a 3.  Which is so tolerable.

So today turned out okay.  The kids went to the Mall and decided to do my food shopping for me.  What a surprise. I have 3 really great kids.

UPDATE:  The kids came home with:

                *  More groceries than I have seen in a long time.

                *  Nick

                * A new Vacuum!!!!! (From Christina)

It felt like Christmas or my birthday.  Well, aside from Nick, who is here all the time.  LOL  My vacuum was so broken.  Gary had been fixing it for months now. But with the lack of funds we were making due.  Chris surprised me with a new one.  This one makes the carpet look soooooo much better.  Thanks Sweetie Pie!!

Friday, September 3, 2004


I think I need to take a break for a while.  My mind has been filled with a fuore of emotions lately.  These emotions are suppose to be staying in my head but they are NOT.  They are drowning my consciousness. 

The phone has stopped ringing here.  Its funny how that happens when you ask people for help.  Yeah, yeah....... They say call if we can do anything to help you.  But when you actually call....... they say "No can do!"

No need to add pictures to this journal entry.  No pictures necessary.

I'm sad.  I'm scared.  I'm angry.  Why?  For no reason.  For every reason.  Because I  have Lupus and it's destroying my life. My health is bad but that's not really the reason I feel like this today today. I can't work and slowly things are getting out out hand.  I'm not dying this I know.  But it has become bad enough that I can't work.  My seizure activity is crazy.  My fatigue is crippling.  The pain is incapacitating.  This stupid Dystonia or whatever it is comes at me like a bull to a matador. My emotional disress  and tears are the red cape.  I am living on Xanax now.  My doctor tells me that this med is one of those used to treat Dystonia.  Although its a lighter formula.  Who knows?  All I want to do is sleep. All I want to do is sleep.  Sleep, Sleep, Sleep.

Wednesday, September 1, 2004


The Verrazano Narrows Bridge opened in 1964 and at the time was the world's longest suspension span. It connects the Fort Hamilton section of Brooklyn to the Fort Wadsworth section of Staten Island.  The towers are 693 feet. The bridge is over 2 miles long.   The towers weigh over 27,000 tons and the bridge is held together with over three million rivets and one million bolts.  As my husband used to tell my son when he was little that that different seasons cause the roadway to be lower in the summer than in the winter.  Until the bridge opened there the only other way to get to Staten Island from New York was from the ferry.  People actually had to go into Manhattan either by train or in their cars and get onto the ferry.  It was a whole day trip.  People actually planned trips to Staten Island.  People used to have summer homes on Staten Island. Staten Island was actually like a suburb.  Now its one of the most crowded boroughs of New York City.

I have never really thought much about the Verrazano Bridge.  My intrigue has just been by its massive structure.  It amazes me that these structures are able to stand and withstand the massive weight of themselves and the traffic.  Plus the wind and erosion of the waters below.

Other things captivate me.  I mean there has been talk of men falling into the concrete as they were pouring the towers.  I think I need to do some research on this “Urban Legend".  My husband says that anything is possible. Becaus when pouring concrete there must be a continuous flow.  I just find these things mind-blowing.

I know that others look at this bridge and see different things. Some see a sense of freedom.  Some see a sense of loss. Some a sense of anticipation.  Some see the future.  It’s an individual thing I imagine.  It can be a beginning.  It can be an end.  I just see a bridge.  A magnificent one, but a bridge none-the-less.