I wish my mind worked better.  I do get moments (they are far and in between) where I can think clearly.  During these moments I feel somewhat normal.  Today wasn't one of those days

Yesterday wasn't either.

At around 3:00 this unyielding, paralyzing feeling of fatigue came over me.  It was pretty horrible.  I had to lay down where I was standing.  I went right down onto the living room floor.  Nothing could get me up.  No amount of trying, nothing at all.  I remained there for almost 45 minutes.

I had to get up because I was in the middle of cooking dinner.  Thank goodness I had decided to put the chicken in the convection oven.

By the time Gary got home from work I was a mess.  It still hits me hard when these things happen.  It's easy to accept this illness when things are going fine.  But even during my better days I still do not have the stamina I once had.

He walked me to bed and told me to go online for a while.  I couldn't keep my eyes open and I had no energy to close up the laptop.  Thank God for my husband.  He is a gem.  He came in and took care of everything for me.

The next thing I knew it was midnight.  I was awoken by the kids.  Most of the time I have a houseful here.  I sat with the girls for a little while but had to drag myself back to bed.  I fell asleep instantly.  For the next thing I remembered was Gary kissing me goodbye at 6:30.  I reached out my arms to hug him and he put the blankets back over me.

I looked up again and it was after 9 am.  My body was in complete agony.  Once again every joint and muscle was in pain.  My head was killing me.  My eyesight was not great.  I kept seeing little flashing circles.

I struggled to the kitchen to get a drink so I could choke down my morning meds.  Maybe this will help I thought to myself.  Increasing my prednisone dosage to 20 mgs. 

About 2 hours later I took a fiorional.  I slept on and off for the rest of the day.  I ended up having to take 2 percocettes and a valium.  This combination seems to be helpful in alleviating my body and head pain. Now my body just feels as if it has been hit by a truck.  Believe me this is a huge improvement from the way I was feeling earlier.

Gary is working late therefore I didn't have to worry about cooking.  Not that he would have insisted on me cooking.  He is so very wonderful about this.  I am the one who feels guilty about not being able to do it.  Everyone manages to find something to eat.

My son ate farina earlier and then made a tuna sandwich.

Lauren is in the kitchen right now cooking for Greg.  Mac and Cheese and some leftover chicken.

I often wonder how others with younger children do it.  I also often thank God for a very loving and understanding husband.

I have an appointment with Dr. Goldstein early next month.  Let's see what my blood work shows.   And, what he has to say about this.

I do know that things with my health could be so much worse.  But on days like this when I know that I most likely will be feeling this way for weeks.  It pretty much sucks.

Hugs, Lu

Favour is deceitful, and beauty is vain: but a woman that feareth the LORD, she shall be praised.  Proverbs 31:30

Sleepy Head

It's 4:30 and I am still awake.  Oh I slept some but nothing to speak of.  Right now I am finding myself getting very sleepy.  I'll go to bed now and will probably sleep late.  And, of course, today I really can't sleep late.  I have to put up the gravy so I can make lasagna.  But what else can I do?  If I don't get the sleep that I need I will be useless.

Therefore, good night gentle readers.  Have the Merriest of Christmases.  Enjoy the birthday of our Lord, Jesus Christ.

MERRY CHRISTMAS

'Twas the Night Before Jesus Came

'Twas the night before Jesus came and all through the house
Not a creature was praying, not one in the house.
Their Bibles were lain on the shelf without care
In hopes that Jesus would not come there.

The children were dressing to crawl into bed,
Not once ever kneeling or bowing a head.
And Mom in her rocker with baby on her lap
Was watching the Late Show while I took a nap.

 

When out of the East there arose such a clatter,
I sprang to my feet to see what was the matter.
Away to the window I flew like a flash
Tore open the shutters and threw up the sash!

 

When what to my wondering eyes should appear
But angels proclaiming that Jesus was here.
With a light like the sun sending forth a bright ray
I knew in a moment this must be The Day!

The light of His face made me cover my head
It was Jesus! returning just like He had said.
And though I possessed worldly wisdom and wealth
I cried when I saw Him in spite of myself.

 

In the Book of Life which He held in His hand
Was written the name of every saved man.
He spoke not a word as He searched for my name;
When He said "It's not here" my head hung in shame.

The people whose names had been written with love
He gathered to take to His Father above.
With those who were ready He rose without a sound
While all the rest were left standing around.

I fell to my knees, but it was too late;
I had waited too long and this sealed my fate.
I stood and I cried as they rose out of sight;
Oh, if only I had been ready tonight.

 

In the words of this poem the meaning is clear;
The coming of Jesus is drawing near.
There's only one life and when comes the last call
We'll find that the Bible was true after all!

 

Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, trust God.
Every moment, Thank God

thanks Jude

I'm pretty tired today.

Well, it's more than tired it's paralyzing fatigue.

AGAIN

Just what I need right before Christmas.

I'm happy we have decided to stay home this year.

I don't think that I could that I would be able to handle the car ride to New Jersey to my niece's house this year for Christmas Eve.

I'm just plain tuckered out.  Every bone hurts.  Every muscle hurts.  My hands are shaking and I feel just terrible.

I was so happy that I had been feeling quite well.  I made the mistake of trying to lower my prednisione dosage.  Apparently I cannot go below 10 mgs.  Even going to 8 or 9 doesn't cut it.

Oh well, I am going to have to wait for my body to like the 10 mgs again.

If I don't get to write again.  I want to wish all my friends a Merry Christmas and a Blessed New Year.

Keep Christ in Christmas

        A woman was out Christmas shopping with her two children. After many hours of looking at row after row of toys and everything else imaginable; and after hours of hearing both her children asking for everything they saw on those many shelves, she finally made it to the elevator with her two kids

        She was feeling what so many of us feel during the holiday season time of the year - Overwhelming pressure to go to every party, every housewarming, taste all the holiday food and treats, getting that perfect gift for every single person on our shopping list, making sure we don't forget anyone on our card list, and the pressure of making sure we respond to everyone who sent us a card.

        Finally the elevator doors opened and there was already a crowd in the car. She pushed her way into the car and dragged her two kids in with her and all the bags of stuff. When the doors closed she couldn't take it anymore and stated, "Whoever started this whole Christmas thing should be found, strung up and shot."

        From the back of the car, everyone heard a quiet calm voice respond, "Don't worry, we already crucified Him." For the rest of the trip down, the elevator it was so quiet you could have heard a pin drop.

        Don't forget this year to keep the One who started this whole Christmas thing in your every thought, deed, purchase, and word.  If we all did, just think of how different this whole world would be.

PRAISE

Well, it's beginning to look a lot like Christmas.  This winter so far we have had three snow events. 

I used to love the snow.  I still do.  But when you are a mother and worry about your children driving in it, things change in your mind.  I've prayed and given my fears over to The Lord so I feel a lot better.  Thank you Lord.

This is a big weekend here.  Both my husband and son will be starting new jobs on Monday.  These two new jobs for my men mark a significant change for them.  I am so very proud of the preparation and skills my men have that have lead them to these new positions.

As many of you know things here in our household have been quite unstable since I became ill. 

There were many times I had lost faith. 

Last year at this time my faith and hope were non existent.  This lapse of faith, my lack of faith caused me to attempt to take my own life.  Thankfully God  is faithful and laid His loving hands upon me and saved me from a physical death.  And, with the prayers of everyone I came through this episode with restored faith. A faith that Our Lord intended me to have.

Now I need to verbally praise Him.  For He has been faithful to me. He has given me more than I can ever give Him back. 

I am still sick and will probably be forever.  Not that He is unable to remove this from my life as well.  Everything in time.  But I can be sick without worry.  My family is taken care of.

So this being said, I make a promise to myself and to My Lord that I will return to church.  Where I can praise Him and bare witness to His Everlasting Mercy. 

Always remember that when things seem their darkest that is the time to Praise Him.  He is a faithful and merciful God. 

And I give unto them eternal life; and they shall never perish, neither shall any man pluck them out of my hand.  John 10:28 

Think about it

People confuse me.  Things that they comment on (aside from ignorant comments regarding my health) never really carry much weight as far as upsetting me.  But put me in a quandary at times.

 

I always try to put myself in the shoes of other people.  Although this is not always possible.  But when a person wears their emotions on their sleeve it’s a pretty easy thing to do.

 

Plus, my Grandmother always had great words of wisdom for most situations regarding those things that come up between friends and acquaintances.   Boy do I wish my Grandmother was around

 

I am learning though.  It blows my mind that I can’t always remember her little pearls of acumen.  She had an astute way of correcting or even avoiding situations that were certain to bring about conflict.  Her words would always come out softly and certain.  Grandma would always tell me that just saying. “Okay!” would most definitely halt a myriad of confrontations.

 

These lessons taught to me have gotten me where I am today.  It is hardly required to “get into it” with another individual over things that I consider inconsequential.

 

My Father’s way of handling similar circumstances were of the notion that we should not let others walk all over us.   His advice to me also comes in handy at times.

 

It if appears to be important to the person why not comply? 

 

Now don’t misinterpret me here.  I can only speak about me.  I can only answer for myself.  If a request is put to me that I need to relay to another, I have no dominion over their actions. Considering that fact, I believe I have fulfilled my obligation by relaying the original request.  In simple terms let’s not kill the messenger.  The outcome is out of my hands.

 

You are probably sitting in front of your computer screen reading ths journal entry and saying to yourself......... 

 

            WHAT IS SHE TALKING ABOUT?

 

You see I was asked to relay a message yesterday.  It wasn’t strange.  Not odd if it had been asked ten years ago.  But to have this brought up now after so many winters.  I had to think of the entire situation and the circumstances behind this

 

So I will end this as I began.

 

And, say to myself ...... put yourself in the shoes of the other person.  Things end up being quite simple when we do this.

Thank you to all of my family and friends who have taken time out of their busy holiday planning to give me a call or come by to see how I am doing.  Hearing from you makes the time go by.  I know it was only foot surgery but being cooped up in this bed while I propped up has been driving me insane.

You have occupied my time and made me feel loved.

FOOT SURGERY

to all you out there in cyber space.

I need to tell you guys that I am humbled and thankful to all the replies I have been receiving via email and comments here from you.

            

You see ever since I had to stop working at a job that I loved.  And, a job that I excelled at.  I have been feeling quite inadequate.

The words you write telling me that I may be helping you,  even in the tiniest way has made me feel useful again.  

But what is more important than that, is that I have been receiving a lot of help from you all. 

So, even if I don't say it often enough I am very thankful.

That being said........

I am here recouperating from foot surgery.  As most of us with chronic illnesses such as Lupus even the minorest of procedures is a big deal for us.

The preparation for this stupid surgery was enough to bring me to tears.  Pre Admission testing was basically normal. Except that mine took twice the amount of time than usual.  Just going over my meds and diagnoses was lengthly.  And,with every med we discussed I had to explain what it was it was for, the dosage and how often I took it.  It was imperative that I assured them that I had begun the transition from coumain (jantoven = the generic form of coumadin) to lovenex injections.    When I would stop the injections (I have a black and blue belly to prove that I am injecting myself with lovenox), resume my coumadin, etc.  Explaining to the Nurse Practitioner that even though my temperature read 99.8, that those numbers were good for me.  Mine usually are 100 or so.

I had to continually remind them that I needed a bolus of solumedrol before and after the surgery.  Plus IV antibotics before and after.

Pre Admission testing was on Tuesday.  I had to see my PCP on Wednesday for medical clearance.  Then on Thursday morning more bloodtests to make sure that my platlettes were where they should be.

                                     

Then in the middle of all of this both of the cars that we just purchased needed to be brought in for servicing.  My Oldsmobile is still under warranty.  The Hyundai is not.  And, Gary thinks it needs a new power steering pump.  I intend to place a call to the owner of the car dealership where we bought the cars.  They had promised me that those cars were prepped and gone over with a "fine toothed comb" before they were handed over to us.  Guess what,  they weren't.  I  had already spoken to the dealership owner about a different subject (they crashed my son's car last time it was in for service) and he was very nice.

So you can see why I am freaking out. These things are not so bad, but I am becoming more and more incapable of dealing with stuff.

Back to my surgery.......  What should have taken the doctor 45 minutes ended up taking a bit less than 3 hours. I had a local with IV sedation.  So I slept through most of it.  I do remember my doctor saying............. Holy shit this is a mess.

My foot is bandaged up with loads of gauze and this new thing I had never seen before.  A gauze type ace banadage.  I cannot get it wet.  He said no showers until I see him on Tuesday.  Hand washing and washing my hair in the sink will have to suffice until I am given the okay to shower.

I have (from what I remember him saying, about a 4 or 5 inch incision with 12 stitchesw on the outside.

Yup it hurts, but if I keep myself medicated I am okay.  Been doing a lot of laying in bed with my foot propped up.  Ice on it for twenty minutes on and off for the next few days.  My back  has been killing me  from laying in bed.  Thank God for the massage chair pad thingie Gary bought me.

My man and family are taking exceptional care of me. Thank you God for giving me such a wonderful husband and kids.

I did manage to get all ofmy Christmas cards written and addressed. Tonight we are eating baked manicotti.  YUMMY

Plus I did a lot of online Christmas shopping.  So I am set.

All in all I feel pretty good.

Have a Blessed Day and Be Well my Friends.

                    

READER QUESTIONS

If anyone has some information for Lucy leave a comment or email her directly.

I like this.  Hopefully, all of us can get the information we need on a myriad of lupus related topics.  Stuff our physicians never know the answers to.  Or  just pooh pooh our questions.

 

Comment from: jmmars0914
"Hi my names is Lucy, I have lovely lupus (yuck ouch) and I have question?  Has anyone noticed that when you are about to start your period your lupus seems to flare up more, I mean alot worse??  I asked my doc about it got no real answer.  Also anyone notice prednisone makes your teeth hurt.  Asked about that also, again no real answer except that it shouldn't be a side effect duh!!!

Thursday Morning

Good Morning my friends!

 

I hope you are well!

 

I am feeling pretty good these days.  I think it must be the prednisone.  I can't think of anything else that could do it.  I am going to be happy for this for as long as it lasts

 

My day yesterday was very confusing for me.  Had to bring my car in for service.  What should have been something straightforward turned out to be so very confusing.  Turns out that because my car is an Oldsmobile I have to bring it to a GM service center.  For someone else this probably wouldn't be a problem but for me it just became too overwhelming for me.  I ended  up going into a crying fit and had to take a valium.  Too many things to think about and my brain got confused.  I'm just not capable of making a lot of decisions at once.  My car is still there but I did manage to make an appointment with GM for Monday.  Gary and my son will take it over there on Sunday.  Problem solved I guess.

Tomorrow I am having surgery on my foot.  It's a pretty straightforward surgery for a regular person.  But for me it has to be complicated.  Like transitioning from coumadin to lovenox.  Getting a million doctors to clear me medically.  Plus the thing that has to be done to my foot.is not normal.  My foot doctor said he has never seen anything like this in his entire career.  What's going on is that first I have a ganglion cyst there.  He said it's not formed like a normal cyst.  What ever that means?  Plus I have a few bone fragments hanging around in there from a few years ago when I fractured that foot.  They are impeding on nerves and causing me quite a lot of pain.  We tried to avoid surgery.  He injected the site with cortisone shots a few times.  He did ultrasound therapy.  Nothing helped.  So I go in tomorrow for this stupid surgery.  I will have to be off my feet for a week or so. I prepared some meals and put them in the freezer so Gary or one of the kids can just pop it in the oven.  I also bought some easy things to cook such as franks, fish sticks and frozen manicottis (that they only have to add the sauce  I already made and some shreaded mutzarells).  We are hooked up here.

 

Have a Blessed Day!

Pretty Good Day

Wow, YIPPEE!  I woke up feeling pretty good this morning.  Actually, I was up early and took my meds and went back to bed.  When I got up at 10:30 am I felt pretty good.  My fatigue level dropped substantially.  I still hurt but the prednisione and percocette are taking care of this.  I'm not going to go do anything stupid like move furniture or even clean anything today.  I'm going to take advantage of this but I'm still going to take it easy.

Lupus still sucks big time.  But today it sucks a little bit less.

I'm also enjoying my Christmas tree and lights.  My son worked all day yesterday putting everything up for me.  I did the ornaments little by little.  He still wants to put more lights outside.  I say, "More power to him!"

I'll include pics when everything is done.

Have a Blessed Day and Be Well,

LuAnne

What I am thankful for.

Don't I look horrid.  Gary calls me racoon eyes.  You can see the remnants of the last lupus sore on my face.  I'm all blown up from being on prednisione.  How lovely.

I am having a very rough time.  It's just so difficult lately.  The pain is getting worse.  Shoulders, elbows, hands, hips, knees and feet all ache horribly.  The muscle pains and spasms are killers.  Then throw in the fatigue. I'm not going to go into the other stuff now. I am fortunate that I can walk from the couch to the kitchen without feeling as if I am going to pass out.  I try to avoid the stairs as much as possible.  Which is a difficult task considering I live in a high ranch type house.  The front door and laundry room are downstairs.  YIKES

It was all I could do to get Thanksgiving dinner on the table. 

I am so happy that we didn't invite company over. 

 I had to choose between getting the dinner ready or showering.  (Don't worry I showered last night before I went to bed.)

I am most thankful for my husband, Gary.  If it were not for him nothing would get done around here.  My children are a God send.  They do most of the chores.  Lauren takes care of most of them.  Gary, Jr. does the hard stuff.

I am particularly thankful that Gary will be starting a new job.  A new job that will afford us the luxury of having someone come in once or twice a month to take care of the heavy cleaning.

But I am so very grateful that my illness is not life threatening now.  Thank you Lord.

HAPPY THANKSGIVING

              

For every creature of God is good, and nothing to be refused, if it be received with thanksgiving.  1 Timothy 4:4

Happy Thanksgiving to all my beloved friends and family.

                                         

                                                                                   

                       

The Lord bless you and keep you; the Lord make his face to shine upon you, and be gracious to you; the Lord lift up his countenance upon you, and give you peace.

Numbers 6:24-26 (NRSV)

Monday

Good evening  readers. I have been lax regarding my journal lately.   Things here have been rough for me health wise. 

To explain what is going on would take a while.  Plus my hands are killing me so I wouldn't be able to do it anyway.

Let's just say that I feel like crap and leave it at that.

I had wanted my journal to be a documentation of my life living with lupus.  But, as any diehard lupie knows sometimes things just don't work out as we plan.

I ask that you keep me in your prayers and send gentle hugs my way.

Lu

I'm sick and tired of being sick and tired.

I need to go to bed now.  I have three lidocaine patches on my right leg.  I've taken "Big Gun" meds.  My chest hurts big time.  I can't walk from here to the kitchen without my chest getting tight, having palpations and becoming extremely dizzy.

And, now I have considerable pain underneath my left breast.

If you could describe your pain using a scale.  One being no pain and ten being the worst pain you have ever had.  How would you rate your pain?

          10

Just so you know

I think it is, once again, time to educate others.  Mainly educate those who give ignorant responses after asking how you are.   

LUPUS OVER-VIEW (copied from ISSY'S LUPUS INFORMATION CENTER)

    Systemic Lupus Erythematosus (SLE, or lupus) is a chronic, incurable disease with four classifications:
* Autoimmune Disease
* Connective Tissue Disease
* Collagen Disease
* Inflammatory Disorder
    and all four are accurate.

As the lupus patient knows, this disease can affect virtually any -— and every part of the body: joints, muscles, organs, and entire body systems. SLE involvement ranges from mild to life-threatening; from slight fever, fatigue, and joint pain -— to disorders of the nervous system, blood and blood vessels -— to permanent organ damage, such as kidneys, lungs, heart, eyes, and gastrointestinal system.

In short, lupus is the result of an over-active immune system in which the body produces too many antibodies. These agents, designed to fight invading organisms (infection/virus) turn against the body and attack healthy cells and tissue, causing inflammation and ultimately, irreparable damage. Thus termed "auto-antibodies" meaning "against the self". The effects can be devastating, disabling, and even fatal.

Individuals with mild SLE find their symptoms are easily controlled, allowing them to continue a relatively normal life-style while experieing long periods of remission.

For those of us who suffer severe disease activity and organ involvement, our conditions may be regulated, but symptoms are rarely ever absent.

We live with constant pain, muscle weakness, disabling fatigue, frequent infections, and an endless variety of multi-system complications.

Most lupus patients also experience any number of secondary conditions, such as Asthma, Diabetes, Fibromyalgia, Sjogren's Syndrome, Raynaud's Phenomenon, Thyroid disease, CREST syndrome, and Anemia, to name a few. These conditions have over-lapping symptoms and it is often difficult or even impossible to know which disorder is responsible for the patient's current problems.

From............ Fatigue In Lupus

Around this time of year, when just about everyone is gearing up for the holidays, the severe, debilitating fatigue that plagues most lupies becomes one of our biggest liabilities. Who wants to go shopping, decorate or wrap gifts when you feel like overcooked spaghetti and frequently choose napping over bathing or eating?

The fatigue that most of us feel on a daily basis isn’t your run of the mill “Gee, I should turn in a little early tonight” sort of tired. It’s more of a “Five whole feet to the bathroom? I guess I can hold it a little longer” tired. Getting enough rest isn’t just difficult, it’s impossible. I call it having a “sleep tapeworm” – No matter how much you get, it isn’t going where you need it to!

Add to your daily fatigue: Holiday dinners, school pageants, shopping for gifts, putting up decorations, cooking, cleaning, keeping up with Christmas cards, late-night parties....Geez, I’m exhausted just thinking about it!

Fatigue in lupus isn’t something that we can just ignore, or shake off. It’s a warning from our bodies, telling us that we cannot keep going at this pace, and that we need to recharge ourselves. Being in a constant state of inflammation is draining in the extreme, and sucks up a lot of our energy without us really realizing it. Additionally, we don’t always get the quality rest that we need at night because of various symptoms and problems of lupus -- Restless leg syndrome, chronic joint pain, fever, Raynaud’s, the list goes on and on.

From............. Educating Ourselves and Others

Lupus is a disease that steals from you. It takes your strength, your self-esteem, your optimism and sometimes even your friends. It gives you pain, fatigue, rashes and fuzzy thinking in return.

 

I am learning to no longer worry about what other people think about my illness, but I can live with it. I try to surround myself with people who take me as I am, believe me and support me. And I laugh every day. Education and laughter. That is a wonderful prescription!

 

From......Lupus Mayo Clinic article

 

No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Even the distinctive rash that gives the disease its name — "lupus" is the Latin word for "wolf" because doctors once thought the rash resembled a wolf bite — doesn't occur in every case.

Most people with lupus have one thing in common, however, and that's the tendency of the disease to get decidedly worse in episodes called flares and then to improve or even disappear completely for a time.

I could go on and on this morning.  Because there are literally thousands (if not millions) of sources on the web designed to educate us about Lupus and other auto immune disorders.  Here a a few things that make me feel really bad.

When I have an upper respiratory infection, don't say to me.  Everyone gets those.  Yup, we Lupies are not a selected group of those who only get respiratory infections. Everyone doesn't feel like this.  And, everyone doesn't take weeks or months to get over it.

Don't tell me to go out, it's a beautiful day.  The sun is shining.  How many times does a person have to explain that for Lupies the sun is pretty much an enemy.

And, especially when someone with Lupus is experiencing horrid, acute pain.  Don't start talking about your pains.  It just belittles us.  That goes for when there are days (weeks or months) that we need to surrender to Lupus.  Those days it's usually the paralizing fatigue that has done us in.  So, don't say that you are tired too.  Lupus patients are not tired.  They are paralized by their fatigue.  There is a HUGE difference there.

Again, I could go on and on.  But the worst one for me is when you ask about how I am doing and then go on to talk about how you have a headache, your period, your tummy hurts.  You will get better.  We won't.  We live like this most of the time.

And, if a day comes that we are feeling somewhat fine.  I know, for me, (and I have heard other Lupies say the exact same thing) I go out, I do things, I try to take advantage of these days because they are so far and few inbetween.  But, I always end up paying for this.  I pay for it big time.

Oh and one more thing.  When talking to Lupies who are not working because of being sick.  Don't tell them that you would give anything in the world not to have to work.  We didn't wake up one day and decide not to go to work ever again.  That choice was made for us when our Lupus symptoms got a whole bunch worse.  We would give anything not to feel as we do and to be able to go to work again.

Just think twice when you speak.

Now I have it.

I received my Medicare card in the mail yesterday.  And, just as my approval for Social Security this was a bittersweet event.

It makes it all the more clearer that I am disabled.  That I am no longer capable of holding down a job.

I loved my job.  I was good, no excellent, at my job.  No one knew the policy and procedures concerning medical records like I did.  I was relied upon to make sure that everything ran smootly and that resident medical charts were complete and accurate.  And, when necessary the proper information was released according to HIPAA regulations.

Then one day I was wheeled out of my place of employment, put in an ambulance and rushed to the ER.  I was having a stroke.  That day was May 13, 2003.  The day before my 46th birthday.  Ever since that day my life has not been the same.

Gradually I started to have problems with my thought process.  I forgot important tasks at work.  I could no longer remember codes or read nurse's notes. My job started to become difficult for me.  For the first time in 8 years I was making mistakes.

Then I started to experience paralizing fatigue, excruciating pain and horrible skin rashes.  It all got to be too much for me.  And, I didn't want to put the nursing home in jeopardy.

I had to go on a medical leave of absence.  I stayed out for six months.  But within two or three weeks it became apparent that I could no longer function in the work place.

Now I have a Medicare card.

Now I write to keep myself sane.

Now I have all the time in the world.  I wished for more time.  Now I have it.

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

Night night my friends.

I know that most of us with chronic invisible illnesses have shared some of the same experiences.  This being said, I am going to share a phone conversation I had this morning.

As many of you know I have not been feeling great during these past few weeks.  I have been experiencing strange headaches.  It actually feels as if my brain is lose in my skull.  And, I feel woozy.  These headaches are not being relieved by my usual "big gun" meds.

I was speaking to a friend who I haven't spoken to in quite a while.  A friend with whom I used to work with.  She called me this morning to see how I was feeling.  I should learn by now to just say "fine."  But I figured since she was calling, she was concerned.  So, I told the truth.

I explained how my body was feeling.  How fatigued I have been and how much my body aches.  I spoke about these new headaches.  And, how they have actually brought me to tears.

Her response to me was that I probably needed new glasses.  While this may be true, I proceeded to clarify my symptoms.  She told me that this happens to her and she just has to wait it out and she feels fine.  She said that her joints hurt her after a long day.  That her memory is not the same.  She said, "Let's face it we are getting older."

During our phone conversation I kept thinking that this woman has no clue what is going on.  That her phone call to me was simply a obligatory call.  At that point I stopped trying to explain my illness.  I decided that it was not worth my energy to speak about this to someone as ignorant as she is.

The sad part of the whole thing is that I was so happy to hear from her.  This phone was supposed to be uplifting to me.  I thought I was past grieving for what has been lost in my life.  I missed my old "friends."  I missed my old life.  In a strange way, I was happy for this phone call.  After it ended I felt relieved.  I felt better about losing my old life.

It made me thankful for those that I do have in my life who understand me completely.  Those who have caught on.  Again, I have to say how wonderful my husband has been through all of this.  He has shown the most wonderful compassion.  He cares for me.  He acknowledges that when I have a headache, it's not always just a headache.  That there can be something more serious going on.  He remembers everything about my illness.  He worries.  He appreciates the effect of my illness.  I am grateful for him and my children.

It's a beautiful autumn day.  The trees are blowing with the morning autumn wind.  Leaves are falling.  This has me remembering a time past.

On days such as today I used to rush to get dressed and go outside with my broom and rake in hand.  My obsessive personality would force me to clean up every leaf that fell.  I would take strange pleasure in seeing a clean sidewalk and lawn.  Happy to view the large black bags filled with the fallen autumn leaves.

Fast forward to this morning.  I can no longer go outside and snatch up every fallen leaf.  I no longer want to.  I am taking great pleasure from seeing all the leaves on the ground.  This is what autumn is all about.  No need for me to rush out and clean everything up.

I believe I have changed.  And, I am sure that this change is for the best of me.  Things are the way they should be.  My life and the leaves are right where they are supposed to be.

Just as I can't change the leaves falling to the ground.  I was never able to get every last one anyway.  I cannot change the path that my life has taken.  Things are different.  Things change.  I now know that I can live with these changes.  I am still ill, but being ill doesn't have to have me.  I will go along with the flow of things the best way I can.

I can rejuvenate my spoons by learning how to use them.  The first and most important way to do this is to learn to accept and not stress.  Life is good.  I am learning to be thankful for what I have rather than grieving over what has been lost. 

The Sunday Seven from Charley

THIS WEEK'S QUESTION:
Of the movies in your current DVD or VHS collection, name seven (in no particular order) that you have watched enough times to make your friends suspect that there might be something wrong with you but that you can't imagine not watching again.

I got this from Dawn's journal Carpe Diem - Seize the Day

1.  The American President

2.  My Cousin Vinny

3.  Pretty Woman

4.  Moonstruck

5.  Uptown Girls

6.  Steel Magnolias

7.  Something to Talk About

Okay, I admit it, I am hooked on Julia Roberts' movies.

 

I can smile

I have realized that I am the only one that can change the way I look at my new life.   It's very odd because when I was healthy and worked like crazy all I wanted was free time.  My life was fast.  Everything was done quickly.  I had no time for ME.  I worked.  I came home and did everything around here.  I slept and woke up and played the day again.

   

Now I have all this time on my hands and was feeling bad for myself.  I made excuses for these feelings.  I believed that I was allowed to wallow.  But, in my wallowing I lost a huge part of me.  Yes, things are different now.  My energy level is minimal.  I hurt constantly.  That still is no excuse to think the way I was thinking.  My life is changed but that doesn't necessarily mean it has to be over.  There is still life in me.  I have to start to concentrate on me.  My children are pretty much self sufficient.  Everyone has their own things to do.  I will find mine.

                 

Maybe I will write.  Maybe craft.  Whatever.  I cannot defeat this demon Lupus but I can control how it makes me feel.  I can smile. 

      

Tagging

1)   Go into your journal archives.
2)   Find your 23rd posting.
3)   Go to the 5th sentence of that post.
4)   Re-post the text of that sentence, with a little explanation.
5)    Tag 5 other people to do the same.

I am inept and ill chosen in spirit to handle this weighty thing that has been pressed upon me. 

This is from my journal entry of  Sunday, February 27, 2005.  It was one of those times when  I was feeling overwhelmed by my illness.  These days (weeks) come and go.  There are times that I am up and times that I am down.  This is the life of a Lupie.

Let's see who I can tag?  How about.....

Karyl

Christina

Jazz

Jackie

and Loretta Life with Lupus

Have some fun.  It's pretty interesting to go back and read some of your past journal entries.

MY NAME

Could someone tell me how to make sure that my name doesn't come up as a spelling error? 

I am pretty positive that I am spelling my name correctly.  Although lately, my mind has been empty.

Do you know what it's like to be alone all day?  I'm so lonely.  No one to talk to. I used to be the type of person who had loads of friends.  I was the one who would talk to everyone and anyone.  I did have two very good friends.  But, unfortunantely, as I grew sicker my friends grew more distant.  It's a common thing for people to disappear from your life when you are going through an illness.  Especially when you have a chronic illness.  I changed.  My illness changed me.  My emotions are changed.  My entire life is changed.  I no longer can do the things I once did.

I am very lucky to have a loving family.  A husband who cares for me without thought for himself.  He has proven time and time again that his love for me is forever.  For this I am grateful.  I am proud to be his wife.  My children are loving and I am proud of them.  But, they go about their business.  And, well they should.  I would not expect anything else.  I am not one of those mother's who want their lives to stop because mine is different.

It has just be hard for me to find my nitch.  A new nitch.  I am not complaining.  I am just thinking how much different things have become.