LIFE 2004 FOR AT A GLANCE (OR LIFE 2004 FOR LUPIES)

LIFE 2004 AT A GLANCE (OR LIFE 2004 FOR LUPIES)

PART I ~ GETTING TO KNOW LIFE ......

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

 

PART II ~~ WORKING WITH LIFE

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

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

PART III ~~ PLAYING THE NUMBERS GAME

 

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

PART IV ~~ MARKING THE PRESENTATIONS

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

PART V ~~ GETTING ORGANIZED

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

PART VI ~~ STORING STUFF

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

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

That's it.   LIFE 2004 AT A GLANCE (OR BETTER KNOWN AS LIFE 2004 FOR LUPIES)

ARGUING

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

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

I HATE ROSES

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

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

A SIMIPLIER LIFE

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

I'M OKAY TODAY

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

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

 

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

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

UPDATE:  The kids came home with:

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

                *  Nick

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

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

A BREAK

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

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

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

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

THE VERRAZANO BRIDGE

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

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

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

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