Tuesday, August 30, 2005

Good Morning.  First I have to apologize to all my cyberspace friends.  I haven't been very diligent in responding to journal entries or posts on the Lupus Message Board.  I have been so very tired lately. 

I'm trying to keep my head above water.  Last night I had another seizure.  It was accompanied by a strange type of headache before hand.  Then after that I was sick to my stomach, still am.  Still have that strange headache.  It's like my head is filled with fog.  That is the best way to explain it.  I'm wondering if the air pressure has anything to do with it.  I think it's very possible.

On Saturday night I had a sleep study.  I was so worried that I wouldn't be able to sleep there.   But, it was quite the contrary.  I fell asleep even before the technician wired me up.  He had to wake me to do it.  Then I fell back asleep right away.  I thought that was weird since I haven't been able to sleep at all before that and after too.  I only woke twice to go to the bathroom.  He was in there right away to untangle the wires for me.

He didn't have to put the CPAP mask on me.  Although, he did tell me I had some episodes of not breathing through the night.  I'm wondering what that means.  I was told there are two types of Sleep Apnea.  The Obstructive type (which hubby has) and the Central type.  As evidenced in the name the Obstructive type means that there is some sort of obstruction with causes a person not to breathe during sleep.  The Central type is a bit more complicated.  It means there the brain forgets to send the signal to breathe.  The chest and abdominal muscles do not get the signal to make a person breathe.  This type comes from a brain injury or stroke.  It's found in the chronically ill and is a bit more difficult to treat.  I'm not sure which I have or if I have it at all.  I have to wait until my follow up with the pulmonolgist to find out.

Next week I have the hearing before the Administrative Law Judge for my Social Security claim.  Hopefully, that will go well.  I have yet to hear from my attorney.  I'm going to give him a call today.  Everyone tells me that it will be a snap.  Especially, considering I have been in the hospital 9 times this year.  We will see.

Saturday, August 27, 2005

Broken Love

My Spectre around me night and day
Like a wild beast guards my way;
My Emanation far within
Weeps incessantly for my sin.

‘A fathomless and boundless deep,
There we wander, there we weep;
On the hungry craving wind
My Spectre follows thee behind.

‘He scents thy footsteps in the snow
Wheresoever thou dost go,
Thro’ the wintry hail and rain.
When wilt thou return again?

’Dost thou not in pride and scorn
Fill with tempests all my morn,
And with jealousies and fears
Fill my pleasant nights with tears?

‘Seven of my sweet loves thy knife
Has bereav├Ęd of their life.
Their marble tombs I built with tears,
And with cold and shuddering fears.

‘Seven more loves weep night and day
Round the tombs where my loves lay,
And seven more loves attend each night
Around my couch with torches bright.

‘And seven more loves in my bed
Crown with wine my mournful head,
Pitying and forgiving all
Thy transgressions great and small.

‘When wilt thou return and view
My loves, and them to life renew?
When wilt thou return and live?
When wilt thou pity as I forgive?’

‘O’er my sins thou sit and moan:
Hast thou no sins of thy own?
O’er my sins thou sit and weep,
And lull thy own sins fast asleep.

‘What transgressions I commit
Are for thy transgressions fit.
They thy harlots, thou their slave;
And my bed becomes their grave.

‘Never, never, I return:
Still for victory I burn.
Living, thee alone I’ll have;
And when dead I’ll be thy grave.

‘Thro’ the Heaven and Earth and Hell
Thou shalt never, quell:
I will fly and thou pursue:
Night and morn the flight renew.’

‘Poor, pale, pitiable form
That I follow in a storm;
Iron tears and groans of lead
Bind around my aching head.

‘Till I turn from Female love
And root up the Infernal Grove,
I shall never worthy be
To step into Eternity.

‘And, to end thy cruel mocks,
Annihilate thee on the rocks,
And another form create
To be subservient to my fate.

‘Let us agree to give up love,
And root up the Infernal Grove;
Then shall we return and see
The worlds of happy Eternity.

‘And throughout all Eternity
I forgive you, you forgive me.
As our dear Redeemer said:
“This the Wine, and this the Bread.”’

William Blake

Friday, August 26, 2005

Special Entry

Please read my other journal........LUANNE'S PRAYERS  for a special entry tonight.

Wants and Desires...Weekend Assignment #74

Weekend Assignment #74: Forget about the things you need -- Tell us about something you want. Thanks Dawn.  I always get the Weekend Assignment from you.  DAWN'S JOURNAL

What I want...hmmm, a totally frivolous desire???

Hum???  This is a hard one.  Something I desire that is totally frivolous.

I'm thinking of a week long spa retreat.  Where I am pampered from top to bottom.  Massages every day.  Reflexology on my feet.  Pressure point massages on my face.  Facials.  Lazy swimming.  Being pampered.

Meals prepared for me consisting of champagne as a beverage.  Eating lobster tails and muscles.  Not having to worry about anything nutritional.  Eating chocolates and puddings. 

Oh that sounds nice, plus I would bring along my friends.  What fun that would be.  How relaxing!!  Especially for my Lupie pals.  I would have them picked up by limo.  It would be a week in heaven.

Tuesday, August 23, 2005

No Sleep

No sleep again.  It's becoming extremely hard to function during the day without getting a restful sleep.  It's not just being tired that is the problem now, I'm getting sick.  Nothing seems to work to alleviate this for me.  I will be going for a sleep study on Saturday night.  I'm wondering if it's possible for them to find anything if I never fall asleep while I am there.  Seems like a fair question, don't you think?

Saturday, August 20, 2005

INSOMNIA

Once again I cannot sleep.  So I have been surfing the net.  Took one of those tests at ..........?? Which Alcoholic Drink Are You ?? - Quizilla

It's great to be able to surf the web, especially when you cannot sleep.

I just wanted to stop by and wish everyone a good night.  It's been one of those weeks and I am just hobbling along.  Everything hurts.  That's just the story of my life.  One of these days I will learn to deal with it.

Friday, August 19, 2005

SLEEPY

 

This is another one of those entries that I have to first type in MS Word.  Something seems to be going wrong with AOL.  I have like 2/3 of my journal entry typed and bang I get booted.  Therefore, I lose everything.  And, with my brain I never remember what I typed.

 

I was in the hospital.  The pain in my chest was so horrid that I had to put in a call to my rheumatologist.  Of course, the nurse there told me he said to go right to the ER.  Because one can never been sure about chest pain.

 

I was dreading going to the ER because of all the previous negative experiences I have had there. But, I was amazed because this time was very different.  The staff was very in tune with my needs regarding pain. The doctor kept trying until my pain was under control.  I really didn’t have to ask because he kept coming in and asking me if my pain was manageable.  He even gave me prednisione without me having to beg for it.

 

I was kept overnight for observation.  They needed to completely manage my pain.  Which was really hard.  This costocondritis pain was one of the worst in my life.  Plus, they kept me just to make sure my cardiac enzymes were good.

 

I was treated like a princess.  The nurse I had was very open to asking the doctor for stronger pain meds.  Within moments I had them.  Although, I absolutely hate being in the hospital; this experience was a very positive one.  The nurse even tried to find out which kind of pain meds were available for me to go home with.  It turned out that there wasn’t anything they could give me.  You see my PCP was on vacation.  So I left withno pain meds.  I had to make due with what I had here.  But, by the time I got home my pain level was significantly down

Once again, hubby had to drive me and sit there.  I finally sent him home a little after 10 pm.  The doctor told me within 45 minutes that I would be admitted.  He was worried about my underlying conditions of Lupus and Antiphhisiploid Syndrome.  He wanted to be safe.

 

The meds that they did give me was dilaudid.  It’s a very strong med and it worked wonderfully.

 

I am pretty tired this morning.  Last night I hardly slept at all.  This appears to be the new pattern.  I cannot fall asleep in my bed so I move to the couch.  Where I do fall asleep while watching TV.  I am up every hour on the hour.  My body just drags all day long and I anticipate being able to get a good night’s sleep.  But, alas, this does not occur.  I am walking in a vicious circle.

 

With this happening I flare a lot quicker than before.  You should see my face, it’s so red.  As a friend once said, I could feel the rash get worse on my face.  Plus my entire body is itchy.  There is no visible sign of a rash there.  I am just scratching my skin up.  I have tried triple antibiotic ointment but it’s not helping.  I was told to use topical cortisone cream, but that just makes it worse.

 

Everything hurts horribly.  Every inch of my body is experiencing some sort of pain.  So I must keep myself medicated.  That makes me even more tired.  Like I said it’s a viscous circle.

I had to cancel my sleep study for tonight.  I cancelled it yesterday because I wasn’t sure if I would still be in the hospital or not.  Also, had to cancel my foot doctor appointment.  For the same reason.  So now I have to life with that stupid pain.  I have a ganglion cyst on the top of my right foot.  The doctor gave me a shot and tried to aspirate it last week.  No luck.  He said hopefully, by this week it would be more uniform.   It looks like that has happened.

 Oh well, have a good day.  I am going to try to get to bed soon.  Everyone here is still sleeping.  Maybe I can get five hours.

 

Monday, August 15, 2005

Pain meds

Not much happening today.  I am hurting a lot. Could hardly walk. Every bone, joint and muscle was hurting.  Had to resort to the "Big Gun" meds.  Thank God hubby had the money to pick up my prescription. I don't know what I would do without him.  He is truly a God Send.  He is my angel!

   Isn't he cute?

Even with the insurance sometimes I can't afford to pick up the prescriptions.  Hopefully, that will all change in a few weeks.

I am going to bed now.  Night Night all

Sunday, August 14, 2005

HEAT ADVISORY

THE NATIONAL WEATHER SERVICE IN UPTOWN NY CONTINUES A HEAT ADVISORY. AFTER A DAY OF RECORD SETTING HIGH TEMPERATURE READINGS ACROSS THE TRI-STATE AREA...HIGH TEMPERATURES WILL SOAR INTO THE LOWER AND MIDDLE 90S ACROSS THE FIVE BOROUGHS ONCE AGAIN. COMBINED WITH SURFACE DEWPOINTS IN THE LOWER TO MIDDLE 70S...HEAT INDEX VALUES WILL ONCE AGAIN RANGE FROM 105 TO 110 DEGREES. TO BEAT THE HEAT...DRINK PLENTY OF WATER OR OTHER NON-ALCOHOLIC BEVERAGES...WEAR LIGHT COLORED LIGHTWEIGHT CLOTHES...AND IF POSSIBLE...SPEND MORE TIME IN AIR CONDITIONED OR WELL VENTILATED PLACES. NEW YORK CITY RESIDENTS SHOULD CALL 3-1-1 TO IDENTIFY COOLING CENTER LOCATIONS AND OBTAIN "BEAT THE HEAT" SAFETY TIPS. CHILDREN...THE ELDERLY AND PEOPLE WITH CHRONIC AILMENTS ARE USUALLY THE FIRST TO SUFFER FROM THE HEAT. HEAT EXHAUSTION...CRAMPS...OR IN EXTREME CASES HEAT STROKE CAN RESULT FROM PROLONGED EXPOSURE TO THESE CONDITIONS. FRIENDS...RELATIVES...OR NEIGHBORS SHOULD CHECK ON PEOPLE WHO MAY BE AT RISK. STAY TUNED TO NOAA ALL HAZARDS RADIO OR VISIT OUR WEB SITE AT WEATHER .GOV/OKX FOR FURTHER DETAILS OR UPDATES.

Another day of near 100 degree temperature.  It's only 6:30 am and its. already 80 degrees with 81% humidity.  It's only going to get worse.  And, it's supposed to rain.  ARRGG!!!

I'm getting very tired of staying indoors.  I've only ventured out a few times.  It's just horrid outside. When I did go out, the heat just did me in.  I became short of breath and dizzy. It appears that the weather outside has a difect effect on my health.  The heat exacerbates my health woes. In this heat I cannot even walk to the car without getting horrific chest pains and feeling as if I am going to pass out.  My windows are fogged over because of the difference in tempature inside and outside.  Our air conditioner has been going nonstop for what seems like weeks. 

 

I cannot wait for Autumn.

Saturday, August 13, 2005

TEN THINGS YOU MIGHT NOT KNOW ABOUT ME

 

 

I got this idea from Dawn’s journal.  Carpe Diem - Seize the Day  She wrote in interesting entry about ten things we didn’t know about her. 

 

Here is mine:

 

1.    I have no middle name.  Neither does my sister.  My name was originally written as Luanne, but I changed it to LuAnne tobe different.  I did this about 30 years ago.  I hated my name, now I think it’s a good name.

 

2.    My first marriage lasted six months.  Basically it was a shotgun wedding although I was not pregnant at the time.  This turned out to be a good thing because I would not have met Gary, my hubby.  He is my first husband’s cousin.  My last name is still the same as it was during my first marriage.

 

3.    My Great Grandmother was an Orthodox Jew from Russia.  She married my Great Grandfather, who was Italian from Naples and her parents disowned her and sat shiva for her.

 

4.    I became pregnant with both of my children while on the pill.  This was amazing because my Mother believed I would never become pregnant.  She was told this by my doctor when I was a teenager.  I had numerous gyn problems.

 

5.    Plus I had precancer of my cervix and became pregnant with my daughter right before surgery.  I had a D and C and they removed a portion of my cervix.  She still made it through all of that.  She still has a strong will and spirit.

 

6.    When I was about four months old, my parents went to see a Dracula movie.  My father worked nights at his parent’s bakery.  My Mother said my first teeth looked like fangs and it scared her one night.  She put me in the carriage and walked to the bakery.  Gee, what was I going to do?  Bite her?  LOL

 

7.    I ran away at the age of 17 because my parents didn’t want me to date someone.  I thought this was a good idea until about midnight, when I went home.  I was at my friend Marc’s house.  His Mother made him drive me home.

 

8.    I had bulimia when I was a teenager.  I thought I had to be thin, thin, thin.  Which I was.  I have outgrown that, but still have a need to be thin.  Which is hard now.

 

9.    I wanted to be a journalist.  I think I could have been a good one.  I love to write and I was very aware of things going on around me.

 

10.   I also used to write children’s stories.  I should try that again.

 

There you have it.  Now you know me a little better.  But, there a just some things I will never reveal.  LOL

 

Sunday, August 7, 2005

Just some pictures

Thursday, August 4, 2005

Please read Barb's journal.......BOTH SIDES OF THE COIN

This is one of the most amazing entries I have ever read.

Tuesday, August 2, 2005

To every thing there is a season

To every thing there is a season, and a time to every purpose under the heaven: Ecclesiastes 3:1

I found this wonderful website written by a Christian woman with LupusONE WOMAN'S STORY: Living with Lupus - Women 

It’s so amazing that most of the stories I have been reading this morning say the same thing.  Such as, I went years without knowing what was wrong with me or The doctors told me it was all in my head or It was my age; after all I was no spring chicken.  You all know how it goes.  The words that doctors tell us before anyone knows what is going on with us makes us feel sad, worthless and like we are just lazy.  But we know better.  There was (and is) something definitely wrong.  Then when we finally get the answer.  The "Diagnosis" we feel like a weight has been lifted off us.  And, we all know that it's not because we want something to be wrong.  But, we have known something has been wrong for so long.  It's a relief to know that there is a name for it.  That's all we are feeling when we are told the "News." 

My first rheumatologist told me that she wasn't going to tell me my diagnosis because she felt it would scare me.  I told her how could it scare me?  I had been through so much in the last years.  I had two strokes.  And, you think that telling me I have Lupus (plus I was already diagnosed with antiphisiploid syndrome) would scare me.  I told her I was relieved.  I have since changed rheumatologists for a number of reasons.  The main reason being that she did not treat my condition as aggressively as it needed to be treated.

Back to the relief we feel when we are finally diagnosed.  Getting a diagnosis drives away all the negative comments and statements we have received for so long.  Getting a diagnosis puts a name to what we are experiencing.  No one wants to be sick, but if we feel like crap all the time.  When we have been experiencing paralyzing fatigue, excruciating pain and a myriad of other symptoms it's a comfort.  Only those who have been experiencing what we experience know how we feel.  Others just look at us like we are crazy when we tell them we finally have a name to what is wrong.  “I have Lupus (and like so many of us have said) It doesn’t have me.

Here are some excerpts from the above website.

Through this trial, I've learned having a chronic illness is not a death sentence. There are times when I feel healthy and energetic and have helped my husband paint the house, clean out the garage, and rearrange the furniture. I try to nap every afternoon, and three or four days per month I find I must have total rest. My family'ssupported me by reading and studying as much as I have to better understand my condition.

The most important lesson I've learned through my experience is that this disease isn't God's punishment for my past sins. In Jesus Christ, all my sins have been forgiven. Lupus is a side effect of living in a fallen world; my responsibility is to use my circumstances to glorify God. And I know he's given me a ministry to others who are similarly afflicted. 

 

Monday, August 1, 2005

This week's promise

 

This week's promise: Our prayers bring us into God's presence (as always from........God's Daily Promises )

 

How should I pray?

 

For days I mourned, fasted, and prayed to the God of heaven. Nehemiah 1:4


Pray like this:
Our Father in heaven, may your name be honored.
May your Kingdom come soon.
May your will be done here on earth, just as it is in heaven.
Give us our food for today, and forgive us our sins, just as we have forgiven those who have sinned against us.
And don't let us yield to temptation, but deliver us from the evil one.
Matthew6:9-13

 

Aligning my will to God's

E. Stanley Jones described the effect of prayer on us like this:

Prayer is not pulling God to my will, but the aligning of my will to the will of God. Aligned to God's redemptive will, anything, everything can happen in character, conduct, and creativeness. The whole person is heightened by that prayer contact. In that contact I find health for my body, illumination for mymind, and moral and spiritual reinforcement for my soul. "Prayer is a time exposure to God," so I expose myself to God for an hour and a half or two hours a day, asking less and less for things and more and more for Himself. For having Him, I have everything. He gives me what I need for character, conduct, and creativeness, so I'm rich with His riches, strong in His strength, pure in His purity, and able in His ability.

quoted by R. Kent Hughes in 1001 Great Stories and Quotes (Tyndale House) p 326

This is always where I fall short.  I do great in my prayer life.  When praying I am strict about asking for God's will in all tht I ask for.  I thank Him.  I tell Him that I will accept His will in my life.  But I never let Him go about His business.  I am always thinking about the things that I have asked God to work on.  I even try to help Him out.

So, of course, He moves back.  He let's me deal with these things.  Even when I specifically told Him that I cannot do this or that on my own.  That my shoulders are not strong enough and that I know that He is capable of changing these things in my life.  So He sits back and says, "You asked for Me to help you, but from where I'm sitting you are trying to do My job.  You are not letting My Will prevail."  God is right when He thinks this.

I've been told so many times that I need to let go of my life and give it to God.  He knows my beginnings and my endings.

  

I tell you the truth, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. And when you stand praying, if you hold anything against anyone, forgive him, so that your Father in heaven may forgive you your sins.  Mark 11:23-25

But if we hope for what we do not yet have, we wait for it patiently. In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will.  Romans 8:25-27

 

So praying for His Will and letting it go is what I need to do.  Like this.....

LET GO AND LET GOD     

As children bring their broken toys,
with tears for us to mend,
I brought my broken dreams to God,
because Heis my friend.
But then instead of leaving Him
in peace to work alone,
I hung around and tried to help,
with ways that were my own.
At last, I snatched them back again
and cried, "How can you be so slow?"
"My child" He said, "What could I do?
You never did let go."  
--Author Unknown