I'm lost in a fog that I cannot escape from.  It's everywhere.  My brain floats in this confusion and try as I may I feel trapped here.

Even though I try to live with this enemy called Lupus, I have surrendered more often than I wanted to.  It's difficult to hold your head up when it physically is weighted down.   When you cannot think.  Therefore, unable to act.

Every muscle and joint in my body feels shackled.  The perplexing fatigue saddens my life.

I understand that this will pass.  I understand that some time whether it be soon or not that I will feel better.  But that does not help me now.

I hate Lupus.

I know that this is because of my recent bout with pneumonia.  But new things have happened.  And, I find it difficult.  Just when I have learned to live with what I think lupus has done, there are new and unpleasant things.  My voice is raspy.  Its been this way for weeks now.  I am worried that this will not go away.  Even with my doctor telling me it will, I don't think so.

I will get through this just as I have gotten through everything else.  It still sucks.

Lupus and Lungs

Life here with LuAnne and Lupus has been very eventful.  For the past four weeks I have been very ill.

I picked something up when Gary and I went to visit my great nieces and nephews.  I can't resist spending time with those little folks.  Three great nieces and two great nephews.  Included in this are a set of twin girls.  And, being so adorable I cannot say no to hugging and cuddling them.  This comes with a great price on my part. 

If you are a "normal" person and you catch a cold, maybe you are sick for two or three days.  But when you are like me and have a chronic illness colds do not only last three days.   Oh yes, it started out as a little cases of the sniffles but that was short lived.  Within two days I was running a fever and hacking my lungs up.

A call to the doctor was all I thought I needed to do.  Antibiotics were prescribed with me promising to stop in and get a chest X-Ray.

Anyway, I could keep rambling here.  But the way things turned out is that I developed a raging case of pneumonia.  Three weeks into this (and three different antibiotics, steroids and various codene cough syrups) I was not getting any better.  I really did think that I would be able to shake this off but to my dismay I couldn't.  Last Saturday morning I got worse.  The coughing was out of control.  Plus I had developed a temp of 103 and the most horrid headache. 

Then I could not catch my breath.  Pretty scary really.  But I tried to wait to wake Gary up because I knew he was so tired and his back was hurting him.  At around 8ish I woke him up and gasped "Call 911!"  Everything after that happened so quickly.  I don't remember much of the ambulance trip nor do I recall the ER.  

I eventually found out that the little thingie they put on your finger said that I was breathing in 87% on 3 liters of oxygen.  Off the oxygen I could not catch my breath.  I was admitted.

I spent 5 nights there.  Breathing O2, getting breathing treatments and IV meds.   I don't know if any of you have been on high dose IV steroids and albuteral ever but it doesn't make for a nice emotional wellbeing feeling.   I was crawling out of my skin.

Well, I am home now and still not great.  But much better than I was.  I'm still taking steroids and antibiotics.  The doctor said this is going to take a while for me to recuperate from.  I was in a bad state. 

Welcome to lungs and lupus.

Throughout all of this my hubby has been there for me.  He has conforted me.  Consoled me.  Put up with my moods.  Played go between with doctors and nurses.  There are no words to thank him.  But as he says, "In sickness and in health".

 

I'm Back

First off I would like to apologize for not being very diligent in reading journals lately. 

I've been sick.  I had (have) a bad chest infection.  It took changing antibiotics two times, two puffer thingies, Clarinex, some new type of cough med that is shaped like tiny Vitamin E pills.  They call it pearls.  Also, I've been taking Lasix for the fluid in my lung.  And, more Tylenol and Advil than I can count.

You do know what taking all that medication has done to my INR levels.  I've always been screwy when it came to keeping my INR therapeutic.  Within the last three or so weeks since I have been sick my levels have been too high or too low.  Currently they are too low (1.7) to be exact.  So between that and hacking constantly (with blood in it), I went to the ER this morning.  The chest X-Ray was pretty good.  It appears that things are calming down in my lungs.  But, this coughing.... Oh this coughing is driving me crazy.  I think that I have popped a rib or two.  Have this pain on the outside of my chest on each side.  But we all know that when you have a chronic illness such as Lupus we don't heal as quickly as others.  My daughter had what I have and she was better in three days.  I am going on my third (or is it forth) week.

Being sick has knocked me down more so than other times.  I cannot walk up the stairs without feeling very winded.  It's as if I am suffocating.

On a more positive note........ John and Krissy ( Sometimes I Think) are home now.  Prayers were answered.  John is doing wonderfully,  I am so happy.  Check out Krissy's journal and leave a positive comment. 

We are planning a trip to see my Mom, Brother and his family down in South Carolina.  We are going in May.  I'm so excited.

As you can see from the time of this entry I am not sleeping.  It's been a bad couple of months as are as my sleeping is concerned.    Loretta (Life with Lupus) writes about this in her journal.  She calls it having sloppy sleeing habits.  Time to go back on Ambien or Lunesta again.  I have to if I want to be able to function at all during the day.

Hugs, Lu

Following Dawn's lead Carpe Diem - Seize the Day I am going to write about what having a chronic, invisible illness has given me.

Living with a chronic illness is quite lonely even when you have a loving family.  I have found new, wonderful friends since I became ill.  Two in particular..... Donna and Hilja ......... We were message board buddies at first but then we became true friends.  Visiting and talking on the phone.  We socialize with each other and our spouses.  It's totally wonderful because I can be myself and I don't have to let the limitations of my illness hinder me.  I love them.

As I love all the other friends I have made online via the Lupus Message Board or through this journal.  I receive from these friends something that I hold so very precious.  Thank you.

And, this not being in any particular order, there is my amazing husband, Gary.  I was blessed the day I married him.  The blessings just keep coming.  He is my friend, my lover, my care giver and my soul mate.  Gary has proven time and time again how special I am to him.  I don't think their is a luckier woman alive.

My children, Gary, Jr. and Lauren, are my pride and joy.  They are everything I could have prayed my children would be.  They are kind, considerate and loving.  Not just to me but to everyone.  I always hear from others how wonderful they are.

So, even though I have been given this burden called Lupus, I am luckier than most.

Thank you.

I am so weak and tired.  Been having horrible pain in my right leg from toe to hip.  My mouth is full of sores and I have a fever blister on my bottom lip.  And, of course, my face looks as if I spent the day laying out in the sun..Oh, yup, little Lupus sores are appearing on my face.

Ah Ha just another day in the life of a Lupie.

People call and ask how I am and I say "FINE."

Would you say different?

Only Gary knows the truth. He is here.  He sees..  He hears my sobbing.

I'm living on percottes.  What else can I do?  That med only takes the edge off.  It doesn't even touch the head pain.  I do think that I need something stronger.

I'm not a happy women these days.  Tomorrow, I suspect, will be more of the same,

Lately I have been thinking about my marriage.  I have a good marriage.  Those of you who have been reading my journal for a while know that every so often I write about my relationship with my husband.  Tonight I feel like writing about what I feel are the tools we all should have to make our marriages work.

Mad passionate love is great.  (I love it, yes.)  But for any marriage to endure the struggles life hands us we need to do a lot.  These things are not chores or hard to do if you are committed and in love.

The first thing is never react.  Respond.  We all fall short sometimes, but this is the most important of the marriage tools.

Build each other up.  Compliment each other.  Verbally let your partner know how much you appreciate him/her.  Let them know that you are proud of them.

Communicate........ emotionally, mentally and physically.  Share your feelings. Discuss things.  Have physical contact.  Not only sexual but non sexual.  An embrace........ And, spiritually.  Share dreams, hopes and prayers.

Marriage is not 50 50.  It's 100 100.  Give your all without any hidden agenda.  My husband is good at this.  He thinks first about me.  I feel inadequate in this. 

And, lastly........ remember your vows.  Remember those words you pledged to each other all those years ago.  Those vows you spoke when you had stars in your eyes and dreams in your mind.

Step over obstacles.  Get past them.  Love each other.

Sunday

Good morning!! 

 

This morning I woke up to a winter wonderland. We are having a blizzard here in New York. I believe we already have 9 inches of snow.  My husband was called to be at work at midnight because they were expecting higher than normal tides.  He is still there.  My daughter, Lauren, is still at work.  She was supposed to get off at 6 am but her replacement has not shown up yet so she is still there.  I think it’s better for her to be there now.  I cannot pick her up because my car is snowed in and the visibility is not good. The weatherman said that there are white out conditions.  So she has to walk home.  It’s not far maybe ¾ of a mile.  It’s better if she walks home when it’s a little lighter out.  I feel bad but there is no way I can get there.  Can’t dig my car out and even if I could our street is not plowed yet and I have to drive downhill to get out of our street.

 

 

I have been feeling pretty good lately.  As many of you know I joined a circuit type gym.  It’s been two weeks and I have to say it’s very hard.  But I go!  Three times a week!  I have also been watching what I eat.  I have cheated once or twice in the last three weeks.  Hey it’s a beginning.  And I am feeling so much better.  That is what counts.

 

 

I wanted to write about “empty nest” syndrome.  I have been feeling like that lately.  My children are still living at home but they are becoming adults with lives of theirown.  I’m having a difficult time with this.  Don’t get me wrong, I am so happy that they are growing up into active, responsible adults.  That’s not it.  It’s that I have been feeling a little useless.  And, a lot lonely.  Gary and I are getting to spend some quality time together.  We get to go out alone.  This is something we haven’t been able to do in a long time.  I mean without having to hire and pay for a baby sitter. It’s really bittersweet.  I am happy that they are going out on their own but sad that they are no longer my babies.

 

 

My son is a bit more sentimental than my daughter is.  He always has been.  Lauren always liked to do things her own way.  This is a very good quality.  I am very proud that she is becoming a decisive and independent woman.  And, she is my baby.  There are times when I think that she doesn’t need me at all.  But, then there are times like this morning when she really needs me.  To pick her up that is.  

Garyis very independent.  He comes and goes when ever he wants.  This has me being the quintessential worrying Mother.  I am going to have to get used to all of this.

 

 

Otherwise I am enjoying this independence.  And, am loving spending time alone with Gary.  We are able to go out to dinner on the weekends.