Sweet Life

Carole King ~~ Tapestry

My life has been a tapestry of rich and royal hue. An everlasting vision of the everchanging view. A wondrows woven magic in bits of blue and gold. A tapestry to feel and see, impossible to hold. Once amind the soft silver sadnessin the sky. There came a man of fortune, a drifter passing by. He wore a torn and tattered cloth around his leathered hide. And a coat of many colors, yellow-green on either side . He moved with some uncertainty, as if he didn't know just what he was there for, or where he ought to go.  Once he reached for something golden hanging from a tree. And his hand come down empty.  Soon within my tapestry along the rutted road. He sat down on a river rock and turned into a toad.  It seemed that he had fallen into someone's wicked spell.  And I wept to see him suffer, tough I didn't know him well As I watched in sorrow, there suddenly appeared a figure gray and ghostly beneath a flowing beard.  In times of deepest darkness, I've seen him dressed in black.  Now my tapestry's unravelling; he's come to take me back.  He's came to take me back!

But that is quite alright! I'm happy! See that picture, thats me with a real smile on my face.  Because I have come to realize that whatever is going on in my life with my health will go on whether I am sad, depressed or happy.  Whatever my mood my health will continue on its own predetermined path.  So, okay I may have to curb the things that I do.  My body frequently does what it pleases without me being able to control it.  I get exhausted by doing simple things.  Things that others do easily.  Agreed, my hair falls out and often my face looks like I spent hours in the sun.  Or my oral and nasal sores are more painful now.  And, there is this often uninterrupted pain running through my body. But, gee wiz (yes, I said gee wiz!) I refuse to grant it access to my heart and soul any longer.  I am rejecting this feeling today.  Hopefully, I will be able to do it again tomorrow.

So as Carole King sings  in her beautiful song Sweet Life....

You say you feel snowed under by circumstances

You can make of it what you will.
You can look at the down side or take your chances and try to make it uphill
Now you can't keep living inside your head in a prison cell all your own.
Just let yourself go get your body out of bed you don't
have to do it all alone.

Well it's a sweet life
Why don't you take a good look around
It's a sweet life baby
don't let it get you down.

Bunches of hugs and love LuAnne

Somewhere Down The Road

So much pain and no good reason why
You cried until the tears run dry
Nothing else can make you understand
The one thing that you held so dear
Is slipping from your hand

And you say
Why, why, why
Does it go this way
And why, why, why
And all I can say is

Somewhere down the road
There'll be answers to the questions
Somewhere down the road
Though we cannot see it now
And somewhere down the road
You will find mighty arms reaching for you
And they will have the answers
At the end of the road

Yesterday I thought I'd seen it all
I thought I'd climbed the highest wall
But now I see that learning never ends
And all I know to do is keep on walking
'Round the bend

Why, why, why
Does it go this way
Why, why, why
And all I can say is

Somewhere down the road
There'll be answers to the questions
Somewhere down the road
Though we cannot see it now
And somewhere down the road
You will find mighty arms reaching for you
And they will hold the answers
At the end of the road

Somewhere, somewhere down
And somewhere down the road
There'll be answers to the questions
Somewhere down the road
Though we cannot see it now
And somewhere down the road
You will find mighty arms reaching for you
They will have the answers
At the end of the road

They will have the answers
At the end of the road

Somewhere down the road, yeah
Somewhere, somewhere
Somewhere, somewhere, somewhere down the road
Why, why, why
There will be arms reaching, down the road
Somewhere, somewhere, somewhere
Oooh

AND THAT'S ALL I HAVE TO SAY ABOUT THAT (or should I say that's what Faith Hill has to say about it!)

WHAT HAS LUPUS GIVEN ME?

Hey that's Hilja, Donna and me.  The second picture is Donna with the devil horns, Vicky in red, Hilja with the straw hat, me with the halo and Linda sitting. A girl couldn't ask for two better friends.  A question occassionally pops up on the Lupus Message Board that asks....."What has Lupus Given You?"  You have read about all the impugn things it has brought to my life.  Or how it has pilaged my body.  But at this moment in time I am thinking about the wonderful people it has brought into my heart and soul.  People like Hilja and Donna.  These two women I met online through the Lupus Messae Board.  We met in person and now are the closest of friends.

Hilja has a pain in the butt kind of Lupus and I am thankful that she does.  My dear friend suffers from slayer Lupus headaches. But when Hilja flares she is thrown for quite a loop.  But, bless her heart she has learned to how to find out what brings on her flares and is aware of how to avoid them.  She is a brilliant woman. Always able to answer my medical questions.  She is a kind soul.  Caring and soft spoken.  Hilja is my confidant,  Never have I called her when I was in need that there was a time that she didn't have time for me.  Hilja is always on my side.  I love her dearly!  We were brought together for a reason and I am so delighted and thankful we were.

Donna, my dear Donna!  What can I say about Donna?  Everyone who knows Donna loves her!  She is an amazing woman.  As sick as she is she keeps going.  We call her the "Dutchess of Do-A-Lot".  I call her the "Energizer Bunny". She has just recently had to go on oxygen after her recent hospital stay.  Donna wasn't feeling "that great" (for those of you who don't know her "not that great" = really sick for novices and those who would rather take to their beds) but Donna took her two grandchildren and the two children she had for two weeks from the Fresh Air Fund to PA.  Long story short Donna was getting sicker and drove home and ended up in the hospital with Pulmonary Edema. Like I said, Donna keeps on going and going.  Donna and I are very much alike as faras our sense of humor and tolerance are concerned.  I can't imagine my life without Donna.  She guides me and tells me about Lupus and life. She is a gem and I am proud to know her!

There are others that I love from the Lupus Message Board.  With these woman we share information, situations, experiences but most of all we share support, life and love. There is Loretta (who inspired me to start writing this journal because her journal is so wonderful and I cannot wait to meet her some time soon), Susan (my email buddy, Shayner (my phone pal), Juliana (who is always in my prayers), Sparkly,  Kellie (my twin), Gracie (our little girl), Betty, Margie, Jacky, Karyl, Kathy, Cindy, Wililow, Laura, Kimberly, Katrina, Jo, The Hollies, DonnaBelle, Mariann,  Brenda, Vicki, Vicky, Patty, Pam, and, Kitten.  And, all you new people I am so glad Welcome to the Board.  To those of you who haven't posted in a while I miss you and hope you are well.  If I have forgotten anyone please forgive me.

So to answer the question...... What has Lupus given me?  It has given me friends.  Wonderful, beautiful friends!

LOVE ME TWO TIME BABY LOVE ME TWICE TODAY

One just for today, Love me two times.  I'm goin' away

Love me one time, cound not speak

Love me one time, yea my knees got weak

I'm trying to come to understand these new things the doctors are telling me.  Its just all coming at me so very quickly.  Mom tells me that God is not going to give me more than he know that I cannot not handle.  She is so proud of me that I get up every day and get dressed and go about my life.  But, I have news its getting harder each day.  I am noticing little things.  Subtle little things.  Like talking with people I have noticed that I phase out.  Sort of like that Charlie Brown and his teacher thing........ Like that "Wha Wha Wha" Thing.  Its  happening more and more often.  Or my depth perception is getting worse.  My reach is off.  I grab for things and either they are closer or further than I have perceiveid.  Other things are happening with my vision, hearing and general concentration.  Its very scary.  I am glad to be writing in this online journal.  I have also begun to write down memories that I want my children to know.  I keep them in a book.  I have included pictures to go along with those memories.  I have started to teach Lauren some of the recipes that I have cooked over the years.  I also have joked with them that one day they will have to pop a video in the tape player to remind me who I am.  Sort of like the movie "50 First Dates."  They laugh but its not so far fetched.  Its scares me.  Cerebral Vasculitis/Lupus Cerebritis is not an illness to be taken lightly.

GRIEVING A FRIEND

I'm grieving the loss of my life long friend today.  Lupus has taken away my friend of 34 years.  Well, my friend has left.  She doesn't understand that Lupus has destroyed my intellect and that I am no longer capable of behaving as I once did.  In her eyes what I forgot to do was unforgivable.  She told me that as a friend I should have remembered to contact her to find out how her son's bar mitzha went because I was unable to attend the party.  You see what happened was that the day of the ceremony and party there was a big blizzard.  The ceremony was rescheduled for the next weekend and the party was rescheduled for a few months later in May.  We attented the ceremony that next weekend and the little party held afterwards.  Unfortunantly, we had a family party the day the "Big Party" was going to be held on.  With my health situation deteriorating and my brain inflammation getting worse I forgot to mail the card.

I cannot prevent you from falling away from friendship, from your values, from me.  I can only pray for you, talk to you and wait for you.

  I tried to call a few times. No return calls were made to me. My friend spoke to me in an Instant Message today.  Explaining that she had things going on and that she is disappointed in me as a friend for not acknowledging her son's party.  I accepted that I was wrong and apologized.  I don't know if she was angry because I didn't send a gift or simply because I didn't call or send a card.  I tried to explain the deterioration in my health status.  But, it appeared to me that she didn't really care.  I tried not to pass judgement because she said that she had things going on.  But she did not elaborate on them.  She told me that she could not talk to me now, that maybe one day she would be able to. She did tell me that she was sorry about my health and that one day maybe she would be able to speak to me. I reminded her that I did love her very much.  All she said was "bye" and signed off of AOL.  She was my friend for 34  years.  This has left a very big hole inside of me.  Not only for the loss of my friend, but the way that the friendship was ended.

Is life made up of what we can do for others and if we don't do those things then friendships are ended in Instant Messages?  Friendships that have lasted years ended in 4 minute IMs.  I will grieve today.  Will you grieve?

CAN I POSSIBLY BE MORE TIRED?

Today I am writing in orange.  Figured I might as well add some energy into my words considering there is none in my body.  To move out of bed this morning was such an ordeal.  Half way through it I just stopped and began sobbing.  No one understands.  No one is in this body. Lupus is a mystery.    I am happy in many ways.  Happy my illness is not something that others can really understand such as cancer.  Cancer they know about.  Cancer they know has a beginning and an end.  Lupus is a mystery to most.  I can quote the text book description of Lupus......Its a unique, complex disease with a wide scope of symptoms.  It is also an elusive condition in that affects individuals differently and often does not follow a predictable course.  All I know is that today I am more than tired.  I am more than worn down.  Its a paralyzing fatigue.  Why am I feeling like this today?  Well lets see?  I had company yesterday.  I made a pot of coffee for my aunt and uncle.  Then they left and Gary and I made dinner.  Yup, normal, easy things that others do and take for granted are torture for me. These things bring on a Lupus Flare which could last days or even weeks.  That's where my wish comes into play.  I want others to understand that I cannot get a grip on how to deal with this illness.  I never know what is going to make My Lupus Flare Up.

The lighthouse!  Today my picture is the lighthouse.  Its all alone there.  Today I feel all alone!

IS IT A WONDERFUL WORLD

WHAT A WONDERFUL WORLD

(George Weiss / Bob Thiele)

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

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

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

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

Oh yeah

Ask me why is this song in my head.  I dunno but its been there for days now.  I love this song.  I have for years.  I can't sing for beans.  But I always get up and sing this song at a Karokee Bar.  Don't care if I make a fool out of myself.  Maybe that's why the song is in my head lately.  This new diagnoses has me really upset lately.  I have been able to handle all the past Lupus crap.  The horrible fatigue, the excrutiating pain.  I have even been able to learn to deal with the disorientation and confusion that the cerebral vasculitis has caused.  I have cultivated an understanding with my Lupus and we work well together now.  I have acknowledged the seizures and resoled myself that they exist and have come to terms with them.  Medications control these woes to where I can almost live my life.  Yes, medications govern me.  But what choice do I have?

Now this!!  My body has taken on a fancy, inclination, villeity of its own.  It does what it pleases.  It twitches, jerks, yanks, pulls and moves on its own.  Does things of its own accord.  I have no control.  I cannot regulate my own body now.  There is no cure.  The approach for treatment of dystonia is usually three-tiered: oral medications, botulinum toxin injections, and surgery. These therapies may be used in alone or in combination.  I am very sad.  Its not only the fact that now its quite obvious that I am sick that upsets me so much really.  Its more that I cannot control this anymore.  People continue to tell me to smile.  They continue to tell me to be the "Old LuAnne."  People still want the "Old LuAnne" back.  I wish they would stop saying that.  Do they realize how much that hurts me.  If only it was that easy.  If only it took them saying it to get the old LuAnne back. I would do it in 2 seconds.  But its not tht easy.  I just wish they could see me when I am trying to swallow 15 pills in the morning and then again in the evening.  And, that's on a good day.  That's not on the days when I need to take pain medication.  That's not on the days when I don't need to take an antibiotic because I have a kidney infection or because I need to be admitted to the hosital because I am dehydrated and have to have IV fluids.  Or because I am hurting so much that I have to have IV steroids because nothing else will help me.  So please think before you tell me you want the "Old LuAnne" back!

Yup,

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

Even though all this crap is happening...... because I still take each day "One day at a time!"