Good evening my friends.  I don't have a very interesting entry this evening.  I'm feeling like crap.  Something is going on with my ears.  Stuff is coming out of the left one and I am hearing swooshing sounds in that ear.  Overall, just feeling horrid.  

NOT ENOUGH SPOONS

It occurred to me that lately my journal entries have been centered around my pain and fatigue.

Something jolted in my brain that I should be writing about better stuff.

But then I realized that this journal is called LUANNE'S LIFE LIVING WITH LUPUS.  Therefore, what I write about is going to be about me and Lupus.

What else should it be about?  It is, after all, my journal.

I don't want to sound like a whinner but ....... Doh!!!

I have Lupus.  Yup, yup I know that I should be saying I may have Lupus but Lupus doesn't have me.  Well, you know something?  Lately Lupus has gotten a good grip on me. 

So, you are going to read the good and the bad.  If you only want good, flowerly stuff find another journal to read.  Sorry, but I have to be straightforward.

Unfortunately, it's been pretty bad recently.  

Pretty bad......... no wait....... horrific is a better word.  

Christine writes about Spoons.  I'm sure most of you are familiar with Christine's accurate description of every day life with Lupus. 

If you haven't read it, please do.   I'm totally out of Spoons. 

I could raid a catering hall and I still wouldn't have enough Spoons.

There just aren't enough. 

Can't even stand at the sink and wash ONE dish without feeling as if I am going to pass out. 

I blow all of my spoons just trying to get moving in the morning.

I have resorted to using "Big Gun" meds a lot.  And, they are hardly working.  

What am I going to do? 

I'm at a loss as towhat to do.  I refuse to go to the ER and deal with those imbeciles.  

Alas, I just pray this pain and fatigue go bye bye.

Lupie Fog

Lupie Fog ~~ Brainfog and Its Signficance  A great site.

 

I’m going to write a little bit about cognitive dysfunction.  It's a subject that many of my Lupie friends are having difficulty with.  But, I can only write about my experiences. 

 

Lately I have been misusing my words.  I just cannot find the right word to describe what is in my mind.  Just this afternoon my daughter, Lauren, made a cup of hot chocolate.  It smelled delicious.  I asked her if there were mushrooms in it.  She said "Mushrooms?"  I said, "Mushrooms."  It didn't occur to me that I was saying the wrong word.  This scared me because usually I would know the word in my head but it would come out incorrectly.  Now I can't even find the right word.

 

But that is not the worst of it. 

 

On many occassions I could not even get my thoughts out verbally.  It was like I was stuttering my words.  I just couldn't get my thought out.  It's even gotten to the point that I am having a difficult time with my thought process.

 

I tell people the same thing over and over again.  Not remembering that I have said the same thing before.  It has gotten to the point where I will say "Have I told you this before?"  after speaking.

 

A real problem for me is getting lost and confused.  It's like a cruel circle that I am traveling.  I get upset and confused when I get upset and confused.  Am I making any sense?

 

I hate it.

 

It is making me very apprehensive.

 

It's not pretty.

 

Cognitive dysfunction is common in those who have Lupus. 

 

Even more common when someone has Lupus and Antiphisiploid Antibody Syndrome. 

 

Can you imagine have all of the above plus Fibromylagia?  Yikes.

 

One of the medications I take is called Namanda, well I think that's the way to spell it.  I am too lazy to get up and look.  But, my point is that it's a medication given to patients with moderate to severe Alzheimer's.

 

A giant YIKES!

 

The following is from SYSTEMIC LUPUS AND THE NERVOUS SYSTEM

 

SYMPTOMS OF CENTRAL NERVOUS SYSTEM LUPUS

 Central Nervous System (CNS)Vasculitis

CNS vasculitis represents inflammation of the blood vessels of the brain. It occurs in up to 10% of all lupus patients, and is the only form of CNS disease that is included in the American College of Rheumatology criteria for defining SLE. Characterized by high fevers, seizures, psychosis and meningitis-like stiffness of the neck, it can rapidly progress to stupor and coma if not aggressively managed. CNS vasculitis is the most serious form of SLE and usually requires hospitalization and high doses of corticosteroids. Infection should be ruled out before treatment is initiated. Seizures occur when injured or scarred brain tissue becomes the focus of abnormal electrical discharges. They may be a one-time occurrence or a persistent problem. Anti-convulsant medications are used to prevent seizures by controlling the brain's abnormal electrical discharges.

Cognitive Dysfunction

At some point during the course of their lupus, up to 50% of lupus patients describe feelings of confusion, fatigue, memory impairment, and difficulty expressing their thoughts. This collection of symptoms is called "cognitive dysfunction" and is found in people with mild to moderately active SLE. These symptoms may be clearly documented by neuropsychological testing, and a newer neurodiagnostic test called the positron emission tomography (PET) scan shows reproducible blood flow abnormalities. The reason for these symptoms is not known but it may have something to do with changes in how a group of chemicals known as cytokines are handled or may be related to certain parts of the brain not getting enough oxygen. Spinal taps, brain wave tests (EEG), magnetic resonance imaging (MRI) or computerized tomography (CT) scans of the brain may all be normal. Antimalarials and/or steroids may be useful, but the management of cognitive dysfunction is often frustrating and currently no optimal therapy is available. Counseling and other interventions that assist a person in developing coping skills may be helpful. Cognitive dysfunction may come and go on its own.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My point is (do I have a point?)  I am getting lost here as I write.  AllI wanted to say is that it's hard to deal with.  I'm wondering if one day I will wake up and be unaware of my surroundings.  Geez, I wonder.  What I wonder more is .... When someone gets like that do they know on the inside what is going on?  Or is every memory and ounce of knowledge gone?

Yes, this scares me.

CarnivAOL

Check out CarnivAOL. Plittle does a great job plugging other people's journals.  Plus you can find some interesting reading there.

12,000

Let's see how long it will take me to make 12,000 visitors to my journal.

A little help please.

Good Evening

Good evening my friends.  I hope everyone has enjoyed their day.

 

I am laying in my bed typing on my son’s laptop.  I think this is quite cool.  I can rest and write a journal entry at the same time.

 

Lately my days have been spent resting.  The change of seasons has brought on new pain.   Even though I love the crisp autumn air, it’s not optimal Lupie weather.  I am sure that you know what I am talking about.

 

Lupus has made me feel like an old lady.  My sleep patterns are that of an old woman.  Was it Loretta who wrote about proper sleep hygiene?  Mine sucks.  I can fall asleep but staying asleep is another story.

 

My doctor has prescribed a combination of Elavil and lunesta.  He said that this should help with my sleep plus alleviate some of my pain.  Unfortunately, there is not much to be done to help me with the pain.  Having lupus and fibro makes things more difficult. 

 

On a more positive note, we purchased two new cars yesterday. Well, they are not brand new but new to us.  We had set out with the idea of purchasing just one car but we found two that worked for us.  One car is an Oldsmobile 88.  It’s a 1998 but in perfect condition and with only 31,000 miles.  The second car is a Hyundai Accent.  It’s a 1997.  But like the Oldsmobile the mileage is low.  The deal was too good to pass up. Plus Gary knows so much about cars so he checked them out.  (His father owned a Gulf station.)  Now there will be transportation for me should I need it

I had to put this in my journal.  This beautiful graphic was made for me by Princess Cher.  Thank you Cher.

 

Please check out her beautiful graphics at her site......Red Rocker Palace

Dear Readers

I have decided to take a break from journaling and from my online activities.  Lately I have been too tired to write any substantial entries.  Unfortunately, my brain is not functioning the way it should.  My pain level is high and my sleep level is low.

I am at a crossroads and I need to take stock of a few things. I will return.  This I promise.  It may be in a week or a month.  I cannot say for sure.  If you have me on your alerts, keep me there

My love and prayers to all.

LUPUS JOURNALS

Please check out these journals.  These woman are doing a wonderful job of promoting Lupus Awareness.

DAWN'S JOURNAL

Karyl

LORETTA'S LIFE WITH LUPUS JOURNAL

Mariann On Lupus and Life

 

 

Also check out the side of my journal for other wonderful journals written by those with invisible illnesses.

'The only sure thing about lupus, is that there is no sure thing about lupus.' (- Coping with Lupus; Robert H. Phillips, Ph.D.; 1991)

Here is another great site for Lupus information.  The Lupus Lady's Autoimmune Disease Support

I promised to give you some great sites when I could during this month.  Remember it's LUPUS AWARENESS MONTH.

I was in the hospital for a few days.  And, it's amazing how unaware the professional medical community is about Lupus.

When You Say Nothing At All Lyrics

It's amazing how you can speak right to my heart
Without saying a word you can light up the dark
Try as I may I can never explain
What I hear when you don't say a thing

The smile on your face lets me know that you need me
There's a truth in your eyes saying you'll never leave me
The touch of your hand says you'll catch me wherever I fall
You say it best when you say nothing at all

All day long I can hear people talking out loud
but when you hold me near you drown out the crowd
try as they may they could never define
Whats being said between your heart and mine

The smile on your face lets me know that you need me
There's a truth in your eyes saying you'll never leave me
The touch of your hand says you'll catch me wherever I fall
You say it best when you say nothing at all

The smile on your face lets me know that you need me
There's a truth in your eyes saying you'll never leave me
The touch of your hand says you'll catch me where ever I fall
You say it best when you say nothing at all

That Smile on your face
The truth in your eyes
The touch of your hand lets me know that you need me

LUPUS AWARENESS MONTH

I've found some good Lupus sites.  During this month, which is Lupus Awareness Month, I am going to try to include a site each day.  This one I just found.  It answers a lot of questions.

Living With Lupus

Here is something interesting from this site.  I knew this.  But I think others need to understand this.

MODERATOR:
We are almost out of time. Before we wrap things up for today, do you have any final words for us, Dr. Blau?

BLAU:
I would like you to be aware of the fact that lupus is different diseases in different people, and many people have a relatively benign course and do not go on to renal deficiency and the other complications of lupus. I have many patients who live relatively normal lives and have borne many children and these patients have lupus, as well.

 

As for me, I am feeling pretty horrible.  Mostly head stuff, twitching and jerking.  I am very very tired.  As for me, I am very aware of Lupus.

THE SUNDAY SEVEN (a day late)

From Patrick's Place

THIS WEEK'S QUESTION:
Take a look at your immediate surroundings.  Not counting your computer, printer, other hardware, software or cables, name seven non-computer things that are on your computer table.

Either answer the question in a comment or answer it in your journal and include the link in a comment.  (To be considered "first to play," a link must be to the specific entry in which you answered the question.)

1.  An ashtray (yes, I know)

2.  A Daily Scripture Meditation Calendar

3.  My High School yearbook

4.  Poetry by Robert Frost

5.  My Special Occasions to Remember book

6.  The Da Vinci Code (I didn't read it, Gary did)

7.  E-Z Pass Statement