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!