Sunday, October 31, 2004

I'm not really writing much ~~ Why's that?

The title of my journal is LuAnne's Life With Lupus.  But lately I haven't written much about that.  It's not coming easy for me these days.  Reading a friend's journal today made me cry.  My heart was crushed reading her declarations. My friend's writings were her life with her illness.  A staggering interpretation of every emotion she felt during that time.  Emotions we all have felt.  Emotions our spouses and children feel.  I am so happy that there are people like her out there to help others.  Because right now I just can't do it.

It used to be so easy for me in the past to do this.  My feelings would glide from my mind to the keyboard.  Something is causing hesitation.  I have nothing to write!  There is so much going on.  There has been so many things that have happened in the past 2 years that would help others.  I just cannot get them to come. Is this what they call "Writer's Block?" I don't understand why this has happened.  Hopefully, I will get back to the place where I was before.  Hopefully, I will be back to writing the way I used to.  In the meantime, hang around and just read what little I do write............


Okay this is hilarious and I thought was a good one for my journal today!!!


Six married men will be dropped on an island with
1 car and 4 kids each for 6 weeks.
Each kid plays two sports and either takes
music or dance classes.

There is no access to fast food.
Each man must take care of his 4 kids, keep his assigned house clean, correct all homework,
complete science projects, cook, do laundry, etc.

The men only have access to television when the kids are asleep and all chores are done.  There is only one TV between them and there is NO REMOTE.

The men must shave their legs, wear makeup daily,
which they must apply themselves, either while driving or while making four lunches.
hey must attend weekly PTA meetings, clean up after their sick children at 3:00 a.m.,make an Indian hut model with six toothpicks, a tortilla and one marker; and get a 4-year-old to eat a serving of peas.

The kids vote them off the island, based on performance.

The last man wins...

only if...

e has enough energy to be intimate with his spouse at a moment's notice.

If the last man does win, he can play the game over and over again for the next 18-25 years...

ventually earning the right to be called




Good bless our mothers!



Saturday, October 30, 2004


Where faith is there is courage, there is fortitude, there is steadfastness and strength. . . . Faith bestows that sublime courage that rises superior to the troubles and disappointments of life, that acknowledges no defeat except as a step to victory; that is strong to endure, patient to wait, and energetic to struggle. . . . Light up, then, the lamp of faith in your heart. . . . It will lead you safely through the mists of doubt and the black darkness of despair; along the narrow, thorny ways of sickness and sorrow, and over the treacherous places of temptation and uncertainty.

James Lane  Allen

I get Journal Alerts all the time.  This quote has been copied from one I received today. Thank you.......Debbie......Please visit Debbie's Journal at .......

I have nothing much more to add except that wonderful quote.  Have a great day!

Friday, October 29, 2004

Don't Ask Me Why?

I've noticed something about me.  This I have noticed only a few times in my life.  During  intense periods in my life I have a tendency to clean out my material possessions.

The first recollection of this I have is when the problem started during my first marriage.  I remember washing every pair of panties I owned.  Every bra and every night gown.  I did this when Michael said he no longer loved me and wanted to end our marriage.  He actually told me I disgusted him.  Even though I hung on to the marriage for as long as I could and refused to divorce him.  Finally, I moved out of the apartment we shared together into another one.  He moved home.  I stayed in that apartment for about a year. I was an emotional wreck.  I stopped eating and became weak.  It was a bad situation all around.  I ended up moving home.  Sold most of everything I owned.  I could care less what the stuff was worth.  I just wanted to be done with the memories.  The memories were too much to bare.  I hurt too much.

The second time I did anything similiar to that was when my Grandfather died.  I had just delivered my son, Gary.  He was exactly one month old when my Grandfather died.  Grandpa died in Florida.  Mom was up in NY to help me.  I wasn't able to go to Grandpa's funeral.  To me, my Grandpa was wonderful.  He might not have been, but I never saw anything but wonderful.  I got a call from my Uncle Bob saying....."He thought Grandpa was dead"  What a phone call to get!  I didn't know the circumstances then but later I found out that they had revived him at home and he had died again.  I think that is what happened.  My memory is fuzzy.  Anyway, Mom left to go back to Florida.  I was left to grieve here in NY.  My purging my possessions was my way to deal with the grief I was going through.  Big black industrial garbage bags were all over my apartment filled to capacity. 

I did it again on Sunday.  Had a garage sale.  These last few months I have been feeling very sad.  Very empty.  Quite lost.  Too much weight on my frail shoulders.  I had the kids put just about everything out on the driveway to be sold. Then donated a lot of the stuff to charity.  Not everything but most of it. Christina was getting upset with me because if someone would look at the price and put something down I would yell out from my chair in the background......... "You can have that for $1.00 or I would say 5 of those for $10.00."  Stuff that was worth way more than that.  It's a good thing I got tired and dizzy and had to go in and sleep.

Some people shop to fill emptiness, some do other things...... I purge my possessions.  And, I like the emptiness of the house.  I like the cleanliness. Don't ask me why.  I suppose there is some psychological explanation.  But, I really don't want to know what it is.



Thursday, October 28, 2004


Gary has been pestering me to once again allow my journal to be public.  I have been considering this for some time now.  I have received numerous emails from people I don't know who have experessed concern that they could no longer read my journal.  It never occured to me that other people out in cyber space were actually reading my journal and enjoying it.  These emails I have been receiving were from other Lupies or just people who knew someone or have a loved one who suffers from Lupus or some other type of auto immune disorder. 

I don't profess to be an expert.  Far from it.  I am just me.  Someone who lives day to day in the mystery of an illness that is just misunderstood.

I made my journal private as not to upset or offend anyone by my thoughts.  But, I have recently come to realize that this is not really the purpose of my journal.  More people have benefited from my journal.  Just by my writing my every day experiences.  By my writing about my life.  Still I have thought about removing some of my journal entries.  This has been the major reason that my journal has remained private these last few weeks.  My journal entries thus far were not written to injur anyone.  We have all been through some kind of pain.  Whether it be because of truth or because of inaccuracies.  The thing here is this is my journal and its my life.  I choose what to write about.

So, that being said.  Lessons have been learned.  And, please enjoy my journal from here on.  Because when I first started this journal that was my intention. ITS ALMOST THE END OF LUPUS AWARENESS MONTH ~~ HOW MORE APPROPRIATE TO END THE MONTH..... Love bunches Luanne

Friday, October 22, 2004

"Must GO's"

Tonight is "Must~Go" night. Which means I don't have to cook dinner tonight.  "Must~Go" night means that everything in the refrigerator "Must~Go."  We don't throw anything away unless it's about to be used to make penicillin.  And, then I have often thought about using it when someone is ill.  NOT!  Having dinners like this free me up.  We have always had dinner nights like this.  Even when I was't sick.  But now it allows me not to feel so guilty about resting and taking care of myself for an entire day.  Webster defines rest as: freedom from activity or labor,  a state of motionlessness or inactivity.  I've been needing this these past few days.  So today I can have some freedom from activity.

That's pretty much all I have to say today.

Thursday, October 21, 2004

Change of Weather

The weather is getting cooler each day.  autumn is upon us.  I like autumn very much.  It is actually my favorite season of the year.  I have to admit that lately the weather  lately has been dreary and rainy but still I love this time of the year.  No more sweltering hot days of summer.  No more sweating and having to keep out of the sun.  No more having to wear sunscreen constantly.


Autumn is a time for nice hot meals and the family sitting together in the evening watching television or a DVD.  Now that Christina is living with us we have even more fun.  We are getting ready to have a garage sale this weekend.  I don’t have to worry about doing too much for the sale.  Everyone is here to do his or her part.  I just have to sit there and watch over things.  Gary will collect the money and it will be used to pay some bills and to make over the garage into a bedroom.  Gary, Jr. will be going into the garage bedroom and Christina will be taking over his room.


With autumn here, it brings thoughts of Christmas.  I don’t know what kind of Christmas we will have as far as gifts are concerned.  But I do know that there will be a lot of love in this house.  The kids will be here to put up the tree.  Last year all we had was a small one.  I was not able to do it by myself.  This year the 3 of them will help with the Christmas decorating. Christmas will be what it should be.  Filled with love and happiness.


Wednesday, October 20, 2004

Veal Stew

I made a veal stew today.  It's been rainy and dreary lately.  So a veal stew was a good meal to make for dinner.  Except that peeling the potatos was hard on my hands.  I think that I took on more than I bargained for with this copious chore.  But it was well worth it.  Everyone loved dinner.  And I felt like I accomplished something.  Gary can't really eat beef and I got such a bargin on the veal this morning I had to make the stew.  Feeding everyone and watching them enjoy dinner makes me very happy, it's worth the pain from peeling the potatos.  So, I had to bring out the "Big Gun" meds.  I knew it was going to be a "Big Gun" med day when I woke up anyway.

I could feel it starting from the beginning of the week.  From the squeezing feeling in my head and the inability to hold my head up.  Like my head was too heavy for my neck to hold my head up.  My gums felt like they were burning.  Muscle and joint pain. The fatigue ~~ I needed to nap more. All the usual signs of a flare.  All this started gradually at the beginning of the week.  I keep losing my balance.  It's okay really because I have the 2 kids here during the day and they look out for me.  Christina and Gary have become my protectors.  It almost as if they guard me now.  They watch over me.  It's really nice to be loved so much.  I'm going to ride this flare out.  Take it easy and rest. I see my neurologist and rheumatologist soon.  So maybe they will have answers for me.  I just went for blood work. 

In the meantime, I'm praying for Tina. 

So Sad

You know my sister in law made me realize something.  In all of this foolishness that has happened during the last few weeks I neglected to realize this myself. Aside from the fact that each and every time I DO go to the ER they do a tox screen. 

 There were assumptions made now lets look at some facts. 

There have been more times that I have NOT gone to the ER than times that I have.

NEVER went to the ER the day I made that stupid medication error.  

 No agency was NOT notified so how can anything be because of my case?

These were assumptions based on emotion not on facts by people who were not in my body when I was experiencing the symptoms.  Again, I feel very sorry that this happened.  I'm sorry you cried.  I'm sorry you got angry.  But most of all I am sorry you assumed.  So Sad

  Life is not that clear cut.  Even life with Lupus.  I prioritize, but do not remove.  I still have my husband and children to love and take care of.  My family and friends as well.  My responsibilities are not so easily dismissed just because they are overwhelming.  So sad.

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance (Garth Brooks......The Dance)

Please don't leave me hugs as comments.  I'm not sad anymore.  Although, I do appreciate  your hugs I really do.  This is just the way it is.  So Sad

Tuesday, October 19, 2004

My truths

Loss of a Friendship

You said you were my friend but on my darkest day,
You turned your back to me, shrugged and walked away.

You said our lives were bound by something stronger then blood,
But on that broken day there were only angry words, not love.

You stole away my pride with your thoughtless words of anger,
And I don’t think you even cared that our friendship was in danger.

Excuses I will hear, I know, tired, stress, not feeling well, will be the reasons given.
But each word cut my soul so deep the scars may not be hidden.

Our friendship lies trampled now on a pile of anger and scorn,
The love that supposedly bound us is permanently torn.

Sue Burkhard
June 27, 1999

For a listing of all of Sue's poems see the link below

I cannot help but be distressed by what happened.   I do not cry much anymore.  It is still something that is in my mind.  I feel very mournful that things ended the way that they did.  That there had to be so much anger involved.  Instead of questions asked there were assumptions made.  Sue's poem projects a lot of hurt and anger.  I used Sue's poem to portray my feeling's in the beginning of this fiasco.  I am still suffering over this situation.  But, I do realize there is nothing I can do to turn the minds of others.  I know my truths.  And, that is all that is necessary in my life. 

Saturday, October 16, 2004


I't not so bad forgetting things.  Not so bad having memory losses.  It makes things a lot easier sometimes. 

My husband is a wise man.  When I am hurting he comes up with the sensible things to soothe me.  Two of the most recent things he has said to me are:

1. Why don't you go back to church.  I think you will feel better if you do.

2. Lu, people say mean things sometimes because they don't know how else to say things to get their point across.

This is an amazing man.  He knows I am upset.  But, also knows how to be rational.  He has held my hand, my head and mostly my heart these last few days.  He is the only one that really knows me.  He has seen me at my best physically.  Now he sees me at my worst physically.  He is hanging on to me.  He says...... "In sickness and in health".  He knows me emotionally and most of all he knows my intimate being.  Better than any friend could.  He has been encouraging through all of this.  Yes, there have been hard times.  I realize this has been hard for him.  But we have just recently come to a place that is comfortable for both of us.

I am also happy to have everyone living under one roof.  Christina has just recently come to live with us.  She has been with us for about a month now.  I feel like I have 2 daughters.  No distinguishing one from the other.  There is laughter in this house.  Something that hasn't been here in a while.  Christina brought that here.  She has always been part of my married life with Gary.  And, she tells me that I am all she remembers too.  That I have always been around.   That I may not be her biological mother but she loves me.  We are a family....... the 5 of us we are a family.

I need a picture of all of us..... (note: Get Gary to take one.)

That is enough journaling for today.

Friday, October 15, 2004


Walk a mile in my shoes.  Is that the phrase?  I wouldn't wish this on an enemy.  This illness is an conundrum.  Its not as straight forward as let's say regular Lupus is.  Lupus with kidney involvement or lung involvement.  Or for those whose labs are clear cut.  APS and cerebritis are an enigma because the Central Nervous System is a mystery.  Not that one or the other are more or less serious.  I'm not saying that at all.  Please don't think for one moment I am saying anything of the sort.  My MRIs are crazy.  They show strange stuff going on.  Demylenation, vasculitis, etc.   My brain goes wacky.  That's the only way I can describe it.  Lately more so than ever things are becoming more and more odd for me.  My facial expressions are off. Gary says I make weird faces.  I cannot form my words properly.  My hands just jerk and shake all by themselves.  My body twitches more than it ever did. I feel like I need to twist my head from side to side. I get confused easier. I have more seizures. My tongue feels like it doesn't belong in my mouth.  And then  I am perfectly fine.  But all the time I have this underlying headache.  What's the most horrible thing about all of this is that they don't know what to do about it.  The doctors agree there is something going on.  They increase my meds.  Take a wait and see attitude.  I just went for more blood work today and go see my neurologist next week.  I will be asking for a spec scan.  It will be able to show the vasculitis.  No, I don't want anyone to walk a mile in my shoes.  It's easy to understand stuff when it's clear cut I guess.  When it's something that is easy and straightforward.  It's sort of like  "But you don't look sick" !  Why when it comes to the brain are people so quick to make judgements about you?



One of my favorite books is called The Blessing.  It is written by Gary Smalley and John Trent, Ph.D.  It's a book that I read when I "need" to.  I have had this book for a very long time.  I have parted with many books.  But never this one. 

I have found this website (below) that somewhat explains the book. 

Thank you for allowing me to write this journal.  Thank you for reading my journal. 

 I have cut and pasted some of the website below as well:

The Blessing is an important study, by Drs. Gary Smalley and John Trent, of an easily overlooked but powerfully effective concept for families and professional counselors. In their years of counseling, they've successfully used the concepts outlined here to heal hundreds of broken hearts and families. The Blessing will even offer peace and healing to those men and women who no longer have any hope of receiving their parents' blessing.

It is a remarkably simple, logical process, one that touches both inner spirit and physical body, one that teaches in a step-by-step manner how to be a blessing and how to pass that life-changing blessing on to your parents, spouse, children, and friends.

There are five elements of the blessing: 1) meaningful touch, 2) the spoken word, 3) the expression of high value, 4) the description of a special future, and 5) the application of genuine commitment. And, in vivid, true-life examples, they describe the five most common home situations where a blessing has been denied. These could be the homes of people you know and love. One of them could even be yours.


Thursday, October 14, 2004


I'm tired tonight!  Actually I am more drained than I am tired.  My mind and my body have been through the ringer today.  But, I believe I am going to be fine.  I have learned how to do something valuable today.  I have learned how to "Let Go".  We have all heard  "Letting  Go"  I don't really think I need to put it in my journal tonight.  But there are a few sentences in "Letting Go" that I would like to include.  And, I will conclude my journal entry for this evening.......

To let go is to not be in the middle arranging the outcomes, but to allow others to affect their own destinies.

Dear Lord, I lift up to you these things that which I need to let go of, you know what they are Lord. I give them to you. Amen!


IF I HAD MY LIFE TO LIVE OVER - by Erma Bombeck (written after she found out she was dying from cancer).

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.

I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would have shared more of the responsibility carried by my husband.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have sat on the lawn with my grass stains.

I would have cried and laughed less while watching television and more while watching life.

I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle. 

When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner." There would have been more "I love you's." More "I'm sorry's."

But mostly, given another shot at life, I would seize every minute...look at it and really see it. Live it and never give it back. Stop sweating the small stuff.

Don't worry about who doesn't like you, who has more, or who's doing what.

Instead, let's cherish the relationships we have with those who do like us.

Let's think about what God HAS blessed us with. And what we are doing each day to promote ourselves mentally, physically, emotionally. I hope you all have a blessed day.

Delicious Ambiguity

Gilda Radner:
I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity.

Gilda Radner was diagnosed with Ovarian Cancer in 1986 and passed away in 1989 at 43 years old. I read that she went through excruciating operations and chemo treatments.  And in the end was afraid to receive pain medication because she thought that she might not awake from it.  I don't know why I am writing about her today in my journal except that I was going over some stuff in my favorite places and came across this and liked her quote and then I did some searching on the web about her.  I remember her death and I remember her life.  I loved her on Saturday Night Live when I was younger. (Gee, how long ago that seems) Her characters Baba Wawa, Emily Litella (based on her childhood nanny) and Roseanne Rosannadanna always cracked me up. 

Gilda was told she was in remission and wrote a book about her life and struggle with cancer.  She called the book "It's Always Something".  She wrote the book for cancer suffers and she  used her humer to overcome the pain.  "It's Always Something" was from her days portraying her character Rosannne Rosannadanna.  "It's always something! If it's not one thing, it's something else!" I need to read this book.

Please read the entire article that I have paraphrased from below.  It has inspired me.  Thank you.

Wednesday, October 13, 2004


Now I lay me 
       Down to sleep        I pray the Lord          My shape to keep.     Please no wrinkles        Please no bags            And please lift my butt         Before it sags.  

Tuesday, October 12, 2004

Shake Rattle and Roll

I'm getting shaky again.  I am noticing it in my walk.  It's how it started that Sunday I went to the hospital.  I don't want to go again.  They did nothing for me there.  Dr. Cardello told me that if this happened to me again I should call 911.  I don't want to.  Maybe it will pass.  Maybe it won't be as bad as it was last time.

Monday, October 11, 2004

Christopher Reeve

Christopher Reeve died on Sunday.  And, although I disagree with his position on a few things I do believe that he was a heroic man.  His life was changed drastically after he broke his neck in May 1995 when he was thrown from his horse.  In the article I read this morning it said.......

A few months after the accident, he told interviewer Barbara Walters that he considered suicide in the first dark days after he was injured. But he quickly overcame such thoughts when he saw his children.

"I could see how much they needed me and wanted me... and how lucky we all are and that my brain is on straight."

But what got me was that he said .......

"I refuse to allow a disability to determine how I live my life. I don't mean to be reckless, but setting a goal that seems a bit daunting actually is very helpful toward recovery," Reeve said.

I have been feeling sorry for myself lately. Grieving my independence over my inability to drive.  Gosh, he couldn't even walk.  I can walk.  I cried yesterday, actually sobbed to Gary because I felt useless.  I felt like I used to be the caregiver and now I was the one who needed the care.  Christopher Reeve needed 24 hour care.  I don't.  God does work in mysterious ways.

Anything written above in blue italics was copied from the article I read. To view the entire article about Christopher Reeve's death and where I copied the picture above from please go to.......

Sunday, October 10, 2004

I Wonder

It's October and October is Lupus Awareness Month.  How many people do you know who are actually aware of what Lupus actually is? Most people have no idea of what Lupus is.  And, if they know they think its some form of arthritis that a motrin or an asprin can cure.  They have no idea what it actually is.   I started to write stuff about Lupus a few months ago but my mind became so confused I  had to stop.  It became difficult for me to continue to do it.  You see "My Lupus" affects my brain.  It's called Lupus Celebritis.  That along with the Antiphisiploid Syndrome (APS) screws me up.  My new rheumi doesn't really know what is happening with me.  He hasn't yet seen me with the criteria to diagnose me with Lupus.  Oh, he has seen the mess my brain is in just by looking at my MRI.  And it's worse each time I have a new MRI. (Time to send for the illegible records from my old rheumi. Let him try to make heads or tails out of them.) My PCP understands my concerns and has seen me at my worst.  He has seen my rashes (facial and body), my nasal and oral sores, joint pain, sensitivity to the sun, flouresant lights, and of course as everyone knows my seizures, and protein in my urine, etc.  We spoke about this on Friday.  Both of them agree that someone with a positive APS may take years if ever to get a positive ANA.  I am caught in limbo.  They keep on increasing my meds.  My seizure meds, pain meds, etc.  Does the rheumi realize that ever since he took me off the CellCept these changes in my health have been occuring.  Yes, the CellCept has made me anemic and given me a mild case of asthma.  But there has to be something else to help me.  When I asked him about it, his response was I haven't seen you with the necessary diagnostic criteria.  Here I am at square one again.  I really do like him.  He is open and honest.  More professional than my last rheumi.  More approachable.  Maybe once he gets my records and/or speaks to my PCP something will be done.  But for now I am so very tired.  The increase in my seizure meds and the stupid increase in my prozac makde me tired.  They tell me that these things will help.  What would happen if I just went off everything completely?  I wonder, could I feel worse than I did before I crashed?

Friday, October 8, 2004


Sunday I got sick again.  Who knows what happened to me. I was pretty okay when I woke up.  I have been feeling confused for sometime now.  My neurologist is aware of this.  Hence the neuropsychological testing.  But, this was really crazy.  I also have been falling to the left a lot lately too.  No explanation for this either.  In the shower I became very confused and disoriented, felt like I was falling backwards.  Knew enough to get out.  Sitting on my bed I felt scared.  I couldn't get my words out.  Gary called my neurologist who was not on call and we spoke to the one who was on call.  A stupid idiot he was.  Asking me all sorts of questions I couldn't answer.  He finally said call 911.  Gary did.  I was in the hospital for 4 days.  They ran tests.  My primary care doctor came in.  He told me that the tests looked fine.  Nothing different on my MRI from June.  The CAT scan showed no bleeding in my brain.  Well at least I have a brain.  Because there are times lately I really think I don't have one.  My thought process is lacking most of the time.  Making decisions has become very hard for me lately.  Doing much of anything is difficult.  This illness has bankrupted my body.  This unhappiness is not simply the result of what this disease, illness, sickness, malaise" or WHATEVER is doing to my body. But the lack of what the "Specialists" can do to help me.  they tell me I am a "Science Project".  I have Antiphisiploid Syndrome.  My brain is a mess. My coumadin levels have yet to be stabilized.  It's been 18 months.  I'm in pain most of the time.  My body is experiencing paralizing fatigue.  I may or may not have Lupus.  Sometimes I do they tell me, sometimes they aren't sure.  So I was in the hospital for 4 days.  They were really nice to me.  Neurologists, My Rheumatologist, My PCP and the Staff Psychiatrist all came to see me.  They called in a Psych Consult because I cried a lot.  Heck wouldn't you?  Oh and my room mate was a 57 year old woman with Alzheimer's Disease.  How encouraging was that? Until now I have gotten up and went through my day with gusto.  Ignoring the pain and fatigure, I did what needed to be done. But now these confusion episodes have been happening more and more often.  I am afraid that I will be somewhere become confused.  When too many things are happening at one time I become very confused.

So I go for my follow up visits with my PCP and to the Coumadin Clinic today.  My Primary Care Doctor whom I love dearly tells me Gary was right to call 911 and if this should ever happen again to do the same thing. I ask why did this happen again?  We just don't know.  My doctors have taken to that familiar "Puppy Dog Head Tilt". He suspects this will occur again.  Until we get this straightened out.  Did you call your neurologist?  Nope, not yet?  Next week, I will.  Okay, see me in a month.  In my mind I am saying......  Who exactly is We?  Off we go (I'm no longer driving anymore.  For fear that I will have another episode and either kill someone else or myself. So my son drives me around.  Talk about grieving one's independence.) to the coumadin clinic.  We have some time in between so he wants to make a stop at the Mall.  I say okay.  I can handle this.  (Or can I?)  I have taken my Xanax.  Let's just run in so I can pick up a holder for my cell phone.  Okay I say.  I decide I will sit in the food court with a cup of coffee and a muffin.  There is no running in any more for me.  But he is my son and I need to try to keep some normalcy in his life.  It only takes 10 minutes.  We are fine.  We go to the coumadin clinic.  My levels are good.  But, Amy, my nurse practitoner says she hears me slurring my words.  We talk a bit and then she decides to print out another instruction sheet with my coumadin dosage because she too believes I will end up back in the hospital.  She tells me she will discuss the possibility of switching me from coumadin to lovenox injections.  That may help.  I have to go back on Monday.  I am not really happy right now.

Saturday, October 2, 2004

No Subject

I'm tired today.  My neurologist has increased one of my seizure meds Trileptal because my seizure activity has increased. Not only has it increased but they are different types of seizures. I have to go from 300 mgs twice a day to 300 mgs in the AM and 600 mgs in the PM.  Then to 600 mgs twice a day.  I have to gradually increase this after a week of the PM increase.  Okay so now I can fall asleep earlier than 7 PM.  Hey would you like to know what my meds consist of.  Okay I will tell you.......

AM Meds:

Trileptal 300mg Seizure med (for now)

Topanax 200 mg Seizure med

Namenda 10mg (memantine) Lupus Celebritis ~also used to treat moderate to severe Alzheimer's Disease

Celebrex 200mg for pain ~~ the next one to be recalled

Prozac 20 mg ~~ Can you guess why?

Prevacid 300 mg ~~ self explanatory

Xanax .25 mg ~~ It's an anti anxiety, but I take it for a tic disorder.

B12 Injections depending upon blood work


Vitamin E 600 i.u.

Chewable C-250 mg

PM Meds

Coumadin dosages vary depending upon INR levels

Trileptal 600 mgs

Topamax 200 mgs

Nameda (memantine) 10 mg

Prozac 20mg

Celebrex 200 mg

Prevacid 30 mg

Crestor 10 mg cholesterol

Folic Acid 1mg at risk of heart disease because of APS

Acidophilus with Pectin

DHEA 25mg

PRN Meds

Lovonex Injections (when INR levels become too low I need to be protected and self inject Lovonex which is low molecular weight heparin.

Tylenol 4

Celebrex 400 mg



Meds on Hold

CellCept  due to anemia

And, yet I function.  How?  I still can't believe it.  I wonder if I will be able to after the increase of the Trileptel.   The neuro tells me that maybe wel will be able to stop the Topamax and just go with the Trileptel.  I dunno.  I didn't tell her yesterday but I believe that the Topamax is keeping the head pain somewhat at a tolerable level. 

Just a note:  Check out Loretta's journal this month, she is writing excellent stuff about Lupus. It's  Lupus Awareness Month!  You go Loretta.  If it weren't for my Dear Friend Loretta,  I wouldn't be writing this journal at all.  So do what I say and read her journal okay. I really think you should have a peek. Here is the link ~~~>