Tuesday, August 31, 2004


I read this once and just today I received it in an email.  It seemed appropriate to add to my journal.


one old love she can imagine going back to and one who reminds her how far she has come...

enough money within her control to move out and rent a place of her own even if she never wants to or needs to...

something perfect to wear if the employer or date of her dreams wants to see her in an hour...

a youth she's content to leave behind....

a past juicy enough that she's looking forward to retelling it in her old age....

a set of screwdrivers, a cordless drill, and a black lace bra...

one friend who always makes her laugh... and one who lets her cry...

a good piece of furniture not previously owned by anyone else in her family...

eight matching plates, wine glasses with stems, and a recipe for a meal that will make her guests feel honored..

a feeling of control over her destiny...

how to fall in love without losing herself...

how to quit a job, break up with a love and confront a friend without ruining the friendship.

when to tryharder... and when to walk away...

that she can't change the length of her calves, the width of her hips, or the nature of her parents...

that her childhood may not have been perfect...but its over...

what she would and wouldn't do for love or more...

how to live alone... even if she doesn't like it...

whom she can trust, whom she can't, and why she shouldn't take it personally...

where to go... be it to her best friend's kitchen table... charming inn in the woods... when her soul needs soothing...

what she can and can't accomplish in a day... a month...and a year...

Sunday, August 29, 2004


And I believe
That angels breathe
And that love will live on and never leave! (Josh Groban)

Ecclesiastes 1
1   The words of the Preacher, the son of David, king in Jerusalem.
2   Vanity of vanities, saith the Preacher, vanity of vanities; all is vanity.
3   What profit hath a man of all his labour which he taketh under the sun?
4   One generation passeth away, and another generation cometh: but the earth abideth for ever.
5   The sun also ariseth, and the sun goeth down, and hasteth to his place where he arose.
6   The wind goeth toward the south, and turneth about unto the north; it whirleth about continually, and the wind returneth again according to his circuits.
7   All the rivers run into the sea; yet the sea is not full; unto the place from whence the rivers come, thither they return again.
8   All things are full of labour; man cannot utter it: the eye is not satisfied with seeing, nor the ear filled with hearing.
9   The thing that hath been, it is that which shall be; and that which is done is that which shall be done: and there is no new thing under the sun.
10   Is there any thing whereof it may be said, See, this is new? it hath been already of old time, which was before us.
11   There is no remembrance of former things; neither shall there be any remembrance of things that are to come with those that shall come after.
12   I the Preacher was king over Israel in Jerusalem.
13   And I gave my heart to seek and search out by wisdom concerning all things that are done under heaven: this sore travail hath God given to the sons of man to be exercised therewith.
14   I have seen all the works that are done under the sun; and, behold, all is vanity and vexation of spirit.
15   That which is crooked cannot be made straight: and that which is wanting cannot be numbered.
16   I communed with mine own heart, saying, Lo, I am come to great estate, and have gotten more wisdom than all they that have beenbefore me in Jerusalem: yea, my heart had great experience of wisdom and knowledge.
17   And I gave my heart to know wisdom, and to know madness and folly: I perceived that this also is vexation of spirit.
18   For in much wisdom is much grief: and he that increaseth knowledge increaseth sorrow.

Ecclesiastes 2
1   I said in mine heart, Go to now, I will prove thee with mirth, therefore enjoy pleasure: and, behold, this also is vanity.
2   I said of laughter, It is mad: and of mirth, What doeth it?
3   I sought in mine heart to give myself unto wine, yet acquainting mine heart with wisdom; and to lay hold on folly, till I might see what was that good for the sons of men, which they should do under the heaven all the days of their life.
4   I made me great works; I builded me houses; I planted me vineyards:
5   I made me gardens and orchards, and I planted trees in them of all kind of fruits:
6   I made me pools of water, to water therewith the wood that bringeth forth trees:
7   I got me servants and maidens, and had servants born in my house; also I had great possessions of great and small cattle above all that were in Jerusalem before me:
8   I gathered me also silver and gold, and the peculiar treasure of kings and of the provinces: I gat me men singers and women singers, and the delights of the sons of men, as musical instruments, and that of all sorts.
9   So I was great, and increased more than all that were before me in Jerusalem: also my wisdom remained with me.
10   And whatsoever mine eyes desired I kept not from them, I withheld not my heart from any joy; for my heart rejoiced in all my labour: and this was my portion of all my labour.
11   Then I looked on all the works that my hands had wrought, and on the labour that I hadlaboured to do: and, behold, all was vanity and vexation of spirit, and there was no profit under the sun.
12   And I turned myself to behold wisdom, and madness, and folly: for what can the man do that cometh after the king? even that which hath been already done.
13   Then I saw that wisdom excelleth folly, as far as light excelleth darkness.
14   The wise man's eyes are in his head; but the fool walketh in darkness: and I myself perceived also that one event happeneth to them all.
15   Then said I in my heart, As it happeneth to the fool, so it happeneth even to me; and why was I then more wise? Then I said in my heart, that this also is vanity.
16   For there is no remembrance of the wise more than of the fool for ever; seeing that which now is in the days to come shall all be forgotten. And how dieth the wise man? as the fool.
17   Therefore I hated life; because the work that is wrought under the sun is grievous unto me: for all is vanity and vexation of spirit.
18   Yea, I hated all my labour which I had taken under the sun: because I should leave it unto the man that shall be after me.
19   And who knoweth whether he shall be a wise man or a fool? yet shall he have rule over all my labour wherein I have laboured, and wherein I have shewed myself wise under the sun. This is also vanity.
20   Therefore I went about to cause my heart to despair of all the labour which I took under the sun.
21   For there is a man whose labour is in wisdom, and in knowledge, and in equity; yet to a man that hath not laboured therein shall he leave it for his portion. This also is vanity and a great evil.
22   For what hath man of all his labour, and of the vexation of his heart, wherein he hath laboured under the sun?
23   For all his days are sorrows, and his travail grief; yea, his heart taketh not rest in the night. This is also vanity.
24   There is nothing better for a man, than that he should eat and drink, and that he should make his soul enjoy good in his labour. This also I saw, that it was from the hand of God.
25   For who can eat, or who else can hasten hereunto, more than I?
26   For God giveth to a man that is good in his sight wisdom, and knowledge, and joy: but to the sinner he giveth travail, to gather and to heap up, that he may give to him that is good before God. This also is vanity and vexation of spirit.

Ecclesiastes 3
1   To every thing there is a season, and a time to every purpose under the heaven:
2   A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
3   A time to kill, and a time to heal; a time to break down, and a time to build up;
4   A time to weep, and a time to laugh; a time to mourn, and a time to dance;
5   A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
6   A time to get, and a time to lose; a time to keep, and a time to cast away;
7   A time to rend, and a time to sew; a time to keep silence, and a time to speak;
8   A time to love, and a time to hate; a time of war, and a time of peace.
9   What profit hath he that worketh in that wherein he laboureth?
10   I have seen the travail, which God hath given to the sons of men to be exercised in it.
11   He hath made every thing beautiful in his time: also he hath set the world in their heart, so that no man can find out the work that God maketh from the beginning to the end.
12   I know that there is no good in them, but for a man to rejoice, and to do good in his life.
13   And also that every man should eat and drink, and enjoy the good of all his labour, it is the gift of God.
14   I know that, whatsoever God doeth, it shall be for ever: nothing can be put to it, nor any thing taken from it: and God doeth it, that men should fear before him.
15   That which hath been is now; and that which is to be hath already been; and God requireth that which is past.
16   And moreover I saw under the sun the place of judgment, that wickedness was there; and the place of righteousness, that iniquity wasthere.
17   I said in mine heart, God shall judge the righteous and the wicked: for there is a time there for every purpose and for every work.
18   I said in mine heart concerning the estate of the sons of men, that God might manifest them, and that they might see that they themselves are beasts.
19   For that which befalleth the sons of men befalleth beasts; even one thing befalleth them: as the one dieth, so dieth the other; yea, they have all one breath; sothat a man hath no preeminence above a beast: for all is vanity.
20   All go unto one place; all are of the dust, and all turn to dust again.
21   Who knoweth thespirit of man that goeth upward, and the spirit of the beast that goeth downward to the earth?
22   Wherefore I perceive that there is nothing better, than that a man should rejoice in his own works; for that is his portion: for who shall bring him to see what shall be after him?

I had been trying to figure out why.  Trying to figure out the answers to my suffering.  But as I read Ecclesiastes 1, 2 and 3 it occurred to me that, indeed To every thing there is a season, and a time to every purpose under the heaven!  And I am blessed because God has chosen me to show others his words and blessings are true.


Wednesday, August 25, 2004


UPDATE: I WENT TO MY APPOINTMENT AT ROBERT WOOD JOHNSON MEDICAL CENTER.  Dr. Mark said I do not have Dystonia.  Which is great.  I was very relieved.  What I do have is a tick disorder.  Like a mild form of Tourette's.  Dr. Goldstein, my Rheumatologist, made a joke.  He said, "What do you do?  Say, Gosh Darn It, instead of cursing?"  I said, "No, I bleep myself out."  It's good I can joke about it.  No more meds needed for this.  The Xanax will suffice for now.  No need to add another "ologist" to my ever growing list of them.  I am happy.  This makes me very happy.



What the heck happened to me while I was sleeping?  My chest, shoulders, arms, neck and head have a mind of their own.  These muscles are moving all by themselves. I can stop it.  But it just starts again.  THE PAIN IS EXCRUCIATING! Mostly its my shoulders and my chest.  They jerk and tighten.  Before this it was something I could deal with.  But now the wait until October 12th seems like forever!  That's when I have the appointment at Robert Wood Johnson Hospital with Dr. Mark to be evaluated.  To see what kind of movement disorder I actually have.  There is no discrepancy about me having a movement disorder, just exactly which one I have.  All I know is that its getting worse and I am in more pain and I want to scream.......Here are a few websites that are pretty informative.

  WE MOVE - Worldwide Education and Awareness for Movement Disorders


I am losing my mind today....!!!!

Sunday, August 22, 2004


As I approach a time in my life when I see a certainty of an end I look at my surroundings.  Not just my immediate surroundings. 

But everything that encompasses me.  I examine with curiosity the expressions on the faces of indivduals with whom I make contact.  It interests me to see how people react to me.  How I am feeling on any particular day has affected others.  I am not saying that I think I have any particular domination or control over others.  I am not that stuck on myself to believe that this could be possible.  What I think is that my actions do have some sort of impact, imprint, repercussion or mark; if you willl; over how people will react to me.  How I am feeling has a great pull on how I am treated and how I treat others.

I see it in my daily activity.  My vigor plays an important role in what I do and how I do it.  That is where my Lupus comes into play.  If I am having a particulary horrible Lupus day my energy force will definitely be sluggish.  Lupus takes away so much from me on those days. Most of my goals at times like this are unattainable.  As much as I try to retain some sense of normalcy in my life I find it an impossible task to complete.  Today was one of those days.  I had to surrender today to Lupus.  Actually, this entire week was surrendered to Lupus. There was absolutely nothing I could do to stop this from happening.  I learned a lesson early on that I could not battle with Lupus.  That I had to put out the "White Flag" and merely surrender this week to the villian Lupus.  Once I learned this I no longer struggled with the pain and suffering that my enemy Lupus brings me.  I can give in and deal with it.

I simply accept the vagary of Lupus and do what needs to be done to conserve my energy.  These such days are happening much more often now.  What am I to do?  Not much I guess?  I just have to learn to accept these kinds of days and weeks.  And, try to have a good outlook.  And, keep looking forward to the better days.  The days when my bang, drive, getup, get-up-and-go, go, pep, punch (LOL) is somewhat like it used to be.  And, that's when I cram everthing into a day or a week or a month.  That's when I don't remember that I am sick. Those are the times when I take long walks. When I dance around the house.  I go outside and tend to my garden.  I see friends.  I shop for shoes.  I do what regular people do every day.  Except that I cram it into a few short days.  I still love life.  It's on those days when I don't remember that I'm sick.  But, then I overdue it and then I start the process all over again. The pain, the paralizing fatigue.  The mouth ulcers.  The exploding head pain. The seizures. Do I need to go over the entire laundry list?






Saturday, August 21, 2004


My head is pounding and I can't do anything to stop it!  

 I would scream except I think that would make me throw up.  I woke up feeling better than yesterday or so I thought.  Then all of a sudden my head just started pounding  I've brought out the "Big Gun Meds".  I hate to do that.  The Fiorional with codene, I just hate to take this med.  This pounding headache is so bad I have to do it and be prepared for the side effects.  I just have to pray that they don't happen.  The side effects of Fiorional with codene are: 

  • an allergic reaction (difficulty breathing; closing of your throat; swelling of your lips, tongue, or face; or hives);
  • slow, weak breathing; 
  • seizures;
  • cold, clammy skin;
  • severe weakness or dizziness;
  • unconsciousness; or
  • black, bloody, or tarry stools or blood in your urine or vomit

Do I have a choice?  I don't know?  Because right now I am feeling like my head is going to explode and leave pieces of my brain all over the place.  It's not a headache.  People get headaches.  Lupus people get explosions.  APS people get swelling in their brain.  I get both.  I'm going to bed now. I wonder what color my aura is now?

Thursday, August 19, 2004


I married Gary on January 16, 1984.  Gary and I have had our share of good and bad times.  The good times have always been wonderful and we have relished in them.  We have not let the bad times hold us down. 

 Oh don't get me wrong we have had our share of problems.  Just as any one has had.  What is our strong point is that we try to understand each other.  And, with me being unwell he has had to assume more responsibility around here.  More responsibility with the children.  More responsibility with most everything.  I have not been able to do so many things.  I do not know what I would do if it were not for him picking up the slack.  The man has had to work countless hours of overtime just to help us make ends meet and that has not always worked financially.  We are waiting for my Social Security Disability case to be approved.  He comes home on most days when I am not feeling well and cooks dinner and then will take care of me.  He is an amazing husband and I love him dearly!  Thank  you Baby!

Tuesday, August 17, 2004


UPDATE  08/21:  CHARLOTTE IS GONE!  I have no idea what happened to her.  I have been watching for her these past few days and have't seen hide nor hair of her.  It's so sad.

A spider has taken up residence outside my bedroom window. And, I have become inclined lately to sit and watch her spin her web during the dusk hours.  I have named her Charlotte.  Charlotte is about the size of a nickle.  Quite big for a spider around here.  Gary doesn't want to even look at her.  But she intrigues me.  I remember when the kids were small we used to watch the Charlotte's Web video endlessly.  They used to cry at the end when Charolotte died.  And would ask me why Charolotte had to die.  It was very hard to answer that question.  To try to explain the life and death mystery to a 2 and 4 year old was very hard.  Heck, its a hard thing to do now.  But, its still a mystery and I don't pretend to understand it.  Everything has a season, is all I understand.  Some seasons last longer than others.  And, I am just going to accept that.

Back to Charlotte.  She is black and white from what I can see.  A very beautiful spider.  I will have my son take a digital picture of her later on today.  Her web isn't very symetrical from what I can see.  It sparkles in the rain.  The sun obstructs it.  She likes to come out in the dark. 

 I don't see her during the day much.   Here is something I copied off the web about spiders:

House spider is a common name for several spiders that often inhabit buildings. One well-known example, the American house spider, lives throughout North America. It has a round brown body about 1/4 inch (6 millimeters) long. The American house spider spins a tangled web, which consists of a jumble of threads.

Other house spiders belong to a group that builds funnel webs. These webs narrow into a funnel at one end, where the spider spends most of its time. Funnel-web house spiders once lived onlyin Europe, but they are now common in North America. They have a spotted brown and gray coloring.

It's relaxing to watch this spider.  Just thought I would share this about my spider.

Monday, August 16, 2004



Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I-
I took the one less traveled by,
And that has made all the difference.


I have always loved this poem by Robert Frost.  Maybe because I can relate to how he has metaphorically described the  trip I have so often taken throughout my life filled with twists and turns. While I have been taking this trip in my life there were times where decisions between paths have had to be made.  Choosing the "already known easy path in life"  I have frequently have had to endure reassures that the outcome will be predictable. While choosing the "less traveled" road it represented the gamble of facing a more difficult path in life in hopes to achieve an incomparable and satisfactory life, contrasting the more familiar lives maybe other people take might take.  It has scared me.

The Road Not Taken describes choice. After vacillating between the two roads, he finally decides to take the road "less traveled by"; knowing he cannot see where it will lead. I have often been afraidto take that "less traveled road."  But now I have no choice.  Lupus has put me on that road.  I am traveling on it.  I am not afraid any longer.  This is the Road my life is taking me.  The LESS TRAVELED ROAD.  And, its an amzaing road!

Sunday, August 15, 2004

Another Day Lost to Lupus

My calves are numb and tingly this morning. It's been coming on slowly and I really don't know what to do about it. My chest hurts.  My head is feeling Lupie.

My bones ache. Its just another day lost to Lupus! I'm sick and tired of all this Lupus stuff today.  Don't have anything more to write this morning.


Thursday, August 12, 2004

My Boy

Oh By the way that's my handsome son in his Marine Corp. Jr ROTC Picture.  He graduated HS last June.  And, will be going to DeVry University in the Fall.  I am so proud! 

We had quite a storm last night.  Actually we had a series of storms.    So, I went to bed early.  I left my hubby playing Shadow Ops on XBox.  Which is okay because he needed to try to stay awake because he had to go get Gary, Jr. at work at 10:00 PM and it was storming outside.  I fell asleep early watching the storm through the big sliding windows in my bedroom.  It was an awesome site.  Thunder, lightening and wind.  The trees were swaying.  The rain was coming down hard.  It was beautiful  Remember a previous entry I made.......The heavens declare the glory of God..........??

Anyway, I woke up this morning and found that my son Gary and his friend Nick had taken over my kitchen, dining room and living room.  They are computer geeks.  They are proud to be called such.  Apparently, when hubby picked Gary up last night Nick came over.  Nick got some new parts for his computer and they have been working on his computer ever since.  (I woke up at 6 AM)  This has become a regular occurranc lately.  I don't mind at all.  Yes, they eat me out of house and home.  But, when other Moms are waiting up wondering where their sons are, I am sleeping in my bed knowing my son is safely in the dining room eating my food and working on computers.  And, he knows that within 5 years he will have a great career.  The kid has a dream and a goal.  He knows what he wants.  Who at 18 has that?  I couldn't be more proud of him!  Not only because of this but because of his sense of responsibility for the family.  He knows what is right and wrong.  People tell me that it is because of the way I brought him up.  I don't know.  But what ever it is, he turned out great.

I have 2 great kids.  A mom couldn't ask for more!

Wednesday, August 11, 2004


A true friend is someone who   reaches for your hand and touches your heart!

Tuesday, August 10, 2004


I am seeing red this morning.  I cannot for the life of me understand the actions of one particular person.  Why would someone do this?  What would be in her mind that she would be so acrid.  I am afraid it goes beyond anything that I can comprehend.  There are a lot of people like this out there.  Its a shame really.  To cause others such pain and suffering.  All I can think about in my mind is........."Judge not lest ye be judged!"  I hope that there never comes a time when this person needs the help and support of others.  But, you know

 something...... people are not ike her!  People are loving and kind.  People are forgiving.  That is what is amazing about love and forgiveness.  It is truly a dishonor that your life is so bantam and senseless that you need to prey on the emotions of others.  It just quandries me.  What do you get out of it.  It escapes my mind.  But I do feel sorry for you.  You need the prayers of those on whom you prey. 

Monday, August 9, 2004

Its Morning

Good Morning!  That's a picture of me and my baby girl, Lauren.  She is my pride and joy.  Lately we have been at odds.  It's just what Moms and teenage daughters do.  But this past weekend was a special weekend.  There was no fighting.  It was a very special time.  We talked together and spoke calmly.  Hugged and kissed.  I wasn't feeling very well this weekend and had to stay in bed most of the time.  Lauren stayed home all day on Saturday and kept me company.  We spent the day together and it was so nice.  It made me so very happy.  Thank you my dear daughter.

Sunday, August 8, 2004

he Inflammatory Process and Autoimmunity

That's me and my Mom!

The Inflammatory Process and Autoimmunity

The normal inflammatory response process is a byproduct of our body's immune system.  Which fights infection and heals wounds and injuries.  When an injury or an infection occurs, white blood cells are mobilized to rid the body of any foreign proteins, such as a virus. The masses of blood cells that gather at the injured or infected site produce cell to repair wounds, clot the blood, and fight any infective agents. In the process the surrounding area becomes inflamed and some healthy tissue is injured. Under normal conditions, the immune system has other factors that control and limit this inflammatory process.

Blood tests reveal that SLE patients are more likely to have been exposed to certain viruses than the general population, but experts have not been able to identify any specific virus as the primary suspect.

Among the viruses that provokes some interest are the Epstein-Barr virus (the cause of mononucleosis), cytomegalovirus, and parvovirus-B1. These viruses are very common, however, and in any case, it is unlikely that viruses are the sole cause of SLE, since immune system defects vary widely from patient to patient.

Some research suggests that different viruses may imprint specific types of SLE. For instance cytomegalovirus may affect blood vessels and cause problems such as Raynaud's phenomenon or blood abnormalities, but may not affect the kidney as much.

Sunlight. Ultraviolet (UV) rays found in sunlight are important SLE triggers. When they bombard the skin, they can alter the structure of DNA in cells below the surface. The immune system may perceive these altered skin cells as foreign and trigger an autoimmune response against them. 

Drug-Induced Lupus. Some people develop lupus symptoms after taking certain prescription drugs. So far about 40 drugs in current use have been linked with the onset of lupus. Drug induced lupus is eliminated after stopping the medications.

Yup, this is getting a bit complicated me thinks.  But, Lupus is a very complicated illness.  Just think how hard it is to diagnoses it.  How hard it must be to treat it.   Yet, how hard it must be for a person to live their life with it.  If it is hard for medical experts to figure out how to get a handle on this illness.  An illness that has been around for hundreds of years.  Can you imagine how hard it must be for us to deal with these medical professionals?  For years many people have been going to doctors only to be sent away being told that their symptoms are only in their head.  Some only to be suffering terribly.  Experiencing paralizing fatigue.  Horrible pain.  And, even worse.....when it becomes too late to do anything about it... organ involvement.  I had to have two strokes for anyone to really take me seriously.  Then all of a sudden doctors were listening to me.  Why, all because I didn't have a positive ANA.  After all without a positive ANA I couldn't possibly have Lupus.  Here is a good article that explains how Non Positive ANA Lupus can exist.  Ask the Expert- Does ANA-negative lupus exist?  It didn't matter that I had 7 out of the 11 diagnostic criteria and a positve antiphisiploid antibody.  Oh now they take me seriously.  And, I am thankful.  But what about all the others out there who are still suffering?  Believe me I wasn't looking to have Lupus.  I was just looking to stop hurting.  I was just looking to be treated.  I just wanted to be fixed.  I just wanted to stop being sick all the time.  I know that I still feel that way all the time.  But, now I know that the doctors can treat me.  There are things that they can do to make me feel better sometimes.

Again, I remain....

       Lu The Lupus Lady

Saturday, August 7, 2004


Unless something strikes my fancy I think I am going to dedicte the next couple of entries in my journal to Lupus education.  Pretty much I am going to just try to read from some sites and put those words into easy undertandable terms that everyone can understand.  So here it goes. 

Tonight's lesson is basically an explanation  of what the heck Lupus is.  We are going to start calling Lupus Systemis lupus erythematosus  or SLE. 

Systemic lupus erythematosus SLE is a chronic, often life-long, autoimmune disease that ranges from mild to severe and afflicts mostly women. Systemic lupus erythematosus SLE can affect any part of the body but it it pretty often hits  the skin, joints, blood, and kidneys (or if you are like me the central nervous sysem).  The  name of the disease explains it all.  Systemic is used because the disease can affect any and all of the organs and tissue throughout the body.

Lupus is Latin for wolf. It refers to the rash that extends across the bridge of the nose and upper cheekbones and was thought to resemble a wolf bite.

Erythematosus is from the Greek word for red and refers to the color of the rash.

The primary characteristics of the disease are the following:

  • Fatigue.
  • Joint pain
  • Recurrent injuries in the vessels that run through our body.

So what the heck causes this thing?  SLE is a intricate disorder that occurs as a aftermath of a number of independent processes and factors, most likely the following:

  • In the same basic premise whereby we send out antibodies to attack bad cells in our body (i.e., when we get a cold)  in SLE these antiboides are out of control, thebodies thinks it has the flu most of the time.. 
  • Lupus may run in families.
  • Environmental factors, such as viruses or sunlight, that aattack the body's cells or bring on other changes that are necessary to trigger a flare
  • is a vexing disease because the first symptoms most likely appear years after the initial event that triggers the disease process. And since there are many immune abnormalities in lupus, tracking down the original cause is very difficult.

For those of us that are Lupies we already know all of this.  I am trying to find ways for our family and friends to understand Lupus better.  Tomorrow........The Inflammatory Process and Autoimmunity ............ Just what you were waiting for.  And, they said I didn't have anything interesting to contribute to life.  Now look at me I'm.....

   Lu The Lupus Lady

Daily Meds or The Heavens Declare the Glory of God

I am getting ready to take my medications.  Well, the morning ones anyway.  All 11 of them this morning.  Well, I usually don't have 11 every morning.  But, since I have Bronchitis now I have 3 new ones.  I suspect that I will be staying on the inhaler for a while.  Right now on the meds I am getting ready to take and a little bit about them.  Now mind you these are in no order of importance.  Just however they pop into my mind.  Remember my mind is an abyss lately and I may have to run back and forth to the kitchen for spelling and stuff like that.  LOL  Okay here goes..... Oh... Oh there are the two seizure meds.....Topomax and Trileptal.  They are working just great.  NOT  My seizure activity comes and goes.  Mostly it comes when I am stressed or upset over something.  Lately its been more so when I get confused over things.  And that is a lot now.  Which brings us to the Namedia.  Its a med that is used to treat mild to severe Alzheimer's disease.  I'm being given this because I have Cerebral Vasculitis.  I have that because of the Antiphisiploid Syndrome.  Basically my brain is inflammed.  For which I also take CellCept.  Its an immuno suppressant.  A chemo drug.  A mild dose of it, yes.  But I still get a lot of the side effects of chemo meds.  Althugh not as severe as IV chemo.  I feel wiped out often.  My hair is thinning. Next I take Prednisone. (Only for a few days ~ thankfully!) Prednisone relieves inflammation (swelling, heat, redness, and pain) and is used to treat certain forms of arthritis; skin, blood, kidney, eye, thyroid, and intestinal disorders); severe allergies; and asthma. Prednisone is a good guy, yup.  It makes  you feel like you have a false sense of euphoria.  A false sense of energy.  But, its a bad guy too.  It makes you put on weight, makes you break out.  Okay you say.  Little stuff to put up with if its going to help me.  But long term use of Prednisone weakens the bones.  It causes Osteoporosis which is not a good thing.  There is a strong correlation between Prednisone use and the need for major joint replacement surgery.  Not for me, I think.  Prozac and Xanax...... Do I need to say more about why I need to takethese two medications.  There is only so much I can do to hold it together myself.  Zithromax, the antibiotic I'm currently on for this Bronchitis.  I'm usually on some kind of antibiotic either for a kidney infection or a bladder infection. Celebrex... I just take it twice a day to help relieve pain.  When the pain gets really bad I must bring in the big guns. (Darvon, Tylenol 4 with codene or Percocette... but first I always try the Celebrex 400 mg first I hate the narcotic head feeling thing and of course the Fiorional for when my head just won't stop aching and the Cerebral Vasculitis is causing things to swell in there).  And, last but not least I have Prevacid which helps my belly handle all these meds. It also help with the GI vasculitis that the Lupus has caused.  I must confess that I just put all the meds in the palm of my hand and throw them in the back of my mouth and wash them down with my coffee.  I also take 2 puffs of my Combivent. But, shush.. don't tell my doctors.  If I had to sit there and follow all the instructions I would be sitting at the kitchen table for hours and then it would be time for my night time meds.  Of which there are just about the same except we add the Coumadin.  Its a blood thinner.  I take it to make my blood thinner (hence the blood thinner name).  The antiphisiploid antibody in my blood just makes my blood throw clots.  At night I also take Folic Acid because I am at risk of heart disease again because of the antiphisiploid syndrome.  Also I take a cholesterol lowering medicine called Crestor because my bad cholesterol is very very high.  My good cholesterol is very very low.  My body just makes it.  With all these meds I am not counting my vitamins and the supplements my doctors have told me to take.  Such as the cranberry pills my urologist advised me to take or the Vitamin E pills or the DHEA pills my endocrinologist and GYN advised me to take.  Or the psyllium husks I add to my orange juice my gastro doctor advised me to take to clean out my colon to help my IBS. Again, I'm not complaining.... It's just a statement of facts. )Thank you Loretta, I just love those words.) This is what its like living with a chronic disease.  I'm proactive as far as my care is concerned.  I'm very fortunante that I have loved ones who recognize my symptoms and act quickly when things are not right and they help me do the daily stuff around here because I am just not capable of doing it anymore.  But, most of all I feel loved.  I don't feel like my illness is a burden or a curse.  First of all things could be a lot worse.  I am able to open my eyes every day and see the wonders around me.  Also, I can close my eyes at night and know I have lived a beautiful day.  

I remember Job and what he said to God after God spoke to him... Job said..... "I know that you can do all things; no plan of yours can be thwarted.  You asked, 'Who is this that obscures my counsel without knowledge? Surely I spoke of things I did not understand, things too wonderful for me to know.  "You said, 'Listen now, and I will speak; I will question you, and you shall answer me. My ears had heard of you but now my eyes have seen you.  Therefore I despise myself and repent in dust and ashes."

Job was faced with tremendous turmoil.  He knew in his heart that God hadn't forsaken him but others were trying to convince him that God had.  I need to remember this.  My faith has always been strong.  Now I need to do as Job had done.  I need to not only have my ears hear of God but have my eyes see him as well.  There is too much going on in my life ..... way too much for me to be able to deal with alone.  And, as much as I enjoy speaking to my family and friends.  And, I will always continue to do so.  Because I love them so very dearly.  I need to get myself back to church.  Even if I sit quietly in the back.  I need to be like Job to see God with my own eyes.  And, that my friends is what's called BEING FAITHFUL. 

The heavens declare the glory of God; and the firmament sheweth his handywork. Day unto day uttereth speech, and night unto night sheweth knowledge.There is no speech nor language, where their voice is not heard.  Their line is gone out through all the earth, and their words to the end of the world. In them hath he set a tabernacle for the sun, which is as a bridegroom coming out of his chamber, and rejoiceth as a strong man to run a race. Psalm 19: 1-5
                           Thank you Karyl

Tuesday, August 3, 2004


Here is an exerpt from a wonderful explanation on how lupus drains our energy.  To read the story in it's entirety please go to

“quote from story here”

-          The Spoon Theory 

By: Christine Miserandino


Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people.  For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to havesomeone or something else, in this case Lupus, being in control.  Here is an exerpt........


 She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?


I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to getmore, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

 I asked her to list off the tasks of her day, including the most simple.  As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too."  I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badlythat it took you 2 hours to do all this.


In her story Christine goes on to say...


When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.


What really got me was when Christine said......


Its hard, the hardest thing I ever had to learn is to slow down and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".


Christine's Spoon Theory is amazing and there is no one who has Lupus who does not use this spoon analogy.


Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".


This was not written by me but was found on the internet.The story is called "The Spoon Theory and was written by Christine Miserandino for the entire test please go to www.butyoudontlooksick.com.   I believe that it exactly explains how I (and how all of us who have Lupus) feel during a flare.  Or just how we live our lives.  I am feeling that way today.  Just the simple act of getting up every day can be torture.  So, please do not be deceived by the wayI look. 

What is lupus?

Lupus is a chronic autoimmune ('auto' meaning 'self') disease in which the body's immune system becomes 'hyperactive' and attacks the body's normal tissues. It is much like the body being allergic to itself.

Okay, now I am tired.  I'm running out of spoons.  You see even a small task such as writing in this journal has wipped me out.  Now I need to go rest for a little while.

Bunches of hugs and love…LuAnne

Monday, August 2, 2004


I had a pretty sucky day today.  Went to see my neurologist this morning who informed me that she thought it was time that I went for neuropsychological testing.  What's funny is that I was going to ask her about it today too.  But she beat me too it.    We had been talking about how my month had been going and of course I was crying because it hadn't been going very well.  I have been losing entire lumps of time.  And, if that's not bad enough I have been forgetting how to do simple things.  Such as ordering a hamburger at a drive through.  After a medical appointment Gary and I went to White Castle's and for the life of me I couldn't remember how to order a hamburger.  It got me so upset.  He got impatient.  It turned out to be a fiasco.  He ordered the burgers.  I couldn't stop crying.  By the time we got home I was wiped out and ended up having a seizure.  I find that I have seizures more often if I am upset, confused or disoriented.  So its like a Catch 22 situation because the Cerebral Vasculitis causes me to be confused, disoriented and have seizures.  But being confused and disoriented causes me to have seizures too. Go figure?  Anyway, after the neurologist I stopped by my job  for a visit.  It was a visit filled with mixed emotions.  I was very sad being there but very happy to see everyone.  A lot has changed.  Being thre today made me realize that I would have a very hard time working.  I had to take a 4 hour nap when I came home.  Gone are the 10 hour work days.  And then coming home and cooking dinner and doing the house work and helping the kids with school projects and whatever else had to be done around here.  I'm lucky if I can manage to get up in the morning and get out of bed.  Then put up a pot of coffee and get in a shower.  I'm not complaining ......... it's just a statement of facts....... just my life with Lupus.

This is another song that has been going through my head lately.  It's Stairway to Heaven by Led Zeppelin.

Bunches of hugs and love Luanne

There?s a lady who?s sure
All that glitters is gold
And she?s buying a stairway to heaven.
When she gets there she knows
If the stores are all closed
With a word she can get what she came for.
Ooh, ooh, and she?s buying a stairway to heaven.

There?s a sign on the wall
But she wants to be sure
?cause you know sometimes words have two meanings.
In a tree by the brook
There?s a songbird who sings,
Sometimes all of our thoughts are misgiven.
Ooh, it makes me wonder,
Ooh, it makes me wonder.

There?s a feeling I get
When I look to the west,
And my spirit is crying for leaving.
In my thoughts I have seen
Rings of smoke through the trees,
And the voices of those who standing looking.
Ooh, it makes me wonder,
Ooh, it really makes me wonder.

And it?s whispered that soon
If we all call the tune
Then the piper will lead us to reason.
And a new day will dawn
For those who stand long
And the forests will echo with laughter.

If there?s a bustle in your hedgerow
Don?t be alarmed now,
It?s just a spring clean for the may queen.
Yes, there are two paths you can go by
But in the long run
There?s still time to change the road you?re on.
And it makes me wonder.

Your head is humming and it won?t go
In case you don?t know,
The piper?s calling you to join him,
Dear lady, can you hear the wind blow,
And did you know
Your stairway lies on the whispering wind.

And as we wind on down the road
Our shadows taller than our soul.
There walks a lady we all know
Who shines white light and wants to show
How ev?rything still turns to gold.
And if you listen very hard
The tune will come to you at last.
When all are one and one is all
To be a rock and not to roll.

And she?s buying a stairway to heaven.

Sunday, August 1, 2004

Nothing Special Tonight ~ Just feeling good!

Just wanted to share that picture of my family.  It was taken six months before what I like to call "THE CRASH".  A lot has change around here but one thing that remains constant is our family!  I am very blessed to have a husband that understands Lupus and who takes very good care of me. He doesn't care that the house is a disaster. He realizes that there is more to life than that. He comes home from work and cooks dinner when I'm too sick to do it. And, two beautiful children that make me very happy! Thank you Loretta for the reminder!  I told you your journal was an inspiration! That's all I have to say about that.