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. 

 

Weight and fatigue

Hiya,

This is going to be a different type of entry. Why, you ask?  Well, I am tired of not having any energy. I am tired of the limitations I have placed on myself.  I may have Lupus and as we all with chronic illnesses know, it has a way of dragging us down.

I have blamed my weight gain on my meds.  Let's face it, I can control that if I want.  It just takes dedication and fortitude.  I have nothing to lose but weight and energy to gain.

So I have decided to do something about it.  Today, I joined one of those circuit work outs.  I had my first workout this morning.  And, as disappointing as it was I am going back tomorrow morning.  Maybe tomorrow I will be able to a little more.  And, a little more the day after that.

One day at a time.  That's all I am going to think about. 

FATIGUE

One of the most troubling symptoms of Lupus for me is fatigue.  I think it's because there is nothing that can be done about it. 

Fatigue is not the same as tired.  When a person is tired and they go to bed and get a good night's sleep.  They usually wake up refreshed.  Those of us with Lupus hardly ever have a refreshing night's sleep.  And, if we do we relish it.  We celebrate it. 

Lupus fatigue is much different.  

Most of people are guilty of not understanding that these two words do not have the same meaning. 

I was one of those people.  That is until I found out first hand that there is a huge difference between being tired and being fatigued.

Lupus is characterized by remissions and flares.  I am pretty lucky because I haven't really experienced a monster flare that has lasted longer than a month or so. And, even with that the worst of it has been a week or so.

I  have learned (or I think I have) how my flares work.  How they come on.  What precedes them.

People often tell me that I should know how to avoid the triggers to my flares.  This is all but impossible.  The fact remains that I have Lupus.  Lupus is still a mystery.

What I mean when I write that I think I have learned how my flares work.  What I mean is that I can predict their track.

There are two courses my body can take before and during a flare.

The first and most common for me is all of a sudden my vision will change.  I see wavy lines.  Wavy lines that are accompanied with flashing lights.  When this happens I know I will soon be having a seizure.  And, then it's pretty downhill from there.

The second and most recent thing that happens is that I begin to experience chest pain.  Nothing to do with my heart, just pain. 

They call it Costochondritis.  Costochondritis is an inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breast bone or sternum.  Let me tell you it's painful.  I thrash my body about just trying to find some comfortable position where the pain is not so intense.

After one of the above occurs my body shuts down.  Any one of the above is proceeded by extreme fatigue.  Nausea, diarrhea.  And, the most horrific pain.  Each and every part of my body becomes inflamed.

The fatigue that accompanies lupus is not the same tiredness you experience after a sleepless night or hard physical work. Instead, it's an ongoing, extreme exhaustion that's usually not relieved by rest.

Then BOOM!!!!  My body returns to "normal".  I can't explain why this occurs.  Could be the prednisione.  Could be anything.

FATIGUE:
Text: a complete depletion of energy or strength Synonyms: burnout, collapse, exhaustion, prostration, tiredness, weariness

TIRED:
Text: depleted in strength, energy, or freshness. Synonyms: beat, bushed, worn-out

Here are some of the sites I used to find information for this entry.

Lupus - MayoClinic.com

About fatigue - Fatigue.

Systemic Lupus Erythematosus ~ After Dx

Health Minute: Living with lupus: when the body turns on itself

 

I am just trying to get across to those who do not understand that there is a difference between being tired and being fatigued.

It's just another one of those days.  And, as always, I will get through it.  We all say......... I may have Lupus, but Lupus doesn't have me.  But, I think that today Lupus has me.  I have surrendered to it.  Today Lupus is a thief.  A thief that has robbed me of my precious energy.

And, to quote Loretta when she wrote in her entry entitled......LUPUS SLUMP.

"This is not a complaint...just a statement of facts.

     This is what it is like to live with lupus."

"Med students are often told, 'Know lupus and you know medicine'. This is because SLE can affect every part of the body. The basic path of lupus, or the factors that cause the disease, get to the core of how the human immune system functions." Dr. Daniel J. Wallace, author, The Lupus Book.

I just read this quote and had to include it here.

This book by Daniel J. Wallace is a must read for anyone who has Lupus.   Or has a loved one with it.

Introspective

I began this journal on Monday, September 15, 2003.  The subject was entitled “My Day”.   The time was 8:46 PM.  And I was frustrated

 

I’m curious if there is a way to find out how often I was feeling worried, happy, lupie, ecstatic or one of the other choices AOL has so kindly provided us.  Often I wish I could add my own mood word.  There are a myriad of words that I could choose from.   How about creepy, sleepy, ugly or fat?  Conversely, there were days when I would be feeling beautiful, normal, or simply irresistible.

 

When I started “LuAnne’s Life With Lupus, the words I typed were for my own survival.  Each and every syllable was meant for me.  My “Dear Journal” type entries were only for me.

 

I have always loved to write. And, as amazing as some might find it; I am good at it

 

There are days when the words flow from my mind to my fingertips.  On these days I feel like an eloquent and gifted writer.  And, I feel magnificent

 

My journal had been in effect for a few months when I had received a comment from someone I had never met nor have I ever spoken to. This woman had been suffering alone, in silence for quite some time.  Her comment to me was that she was very thankful to me because I was putting into words what she was feeling.

 

Since that first comment I have received many other comments. More over I have received thousands of emails and IMs from others who have been suffering in silence..

 

It was then that it occurred to me that language I was conveying here in this journal was meant not just for me but for others who were like me..

 

There are millions of other people who are experiencing the stigma of what having an invisible illness brings with it.,

 

I came across this poem. I highly suggest reading it. Here is the link…..http://www.fms-help.com/poem2.htm I would copy and paste it here but I am unsure of copy write laws and stuff.

 

After doing an Internet search Invisible Illnesses I learned a lot.  First off, there were more sites on this subject.  The one I love the most is written by Christine Miserandino.  Here is the link to her site.  Be sure to check out SPOONS.  Christine is one of the most amazing and knowledgeable woman I have come across.  http://www.butyoudontlooksick.com/about_us

 

Throughout my journey into J-Land I have became friends with loads of woman.  And, as I wrote about above, not all have Lupus.  But all have some sort of disease that has changed their lives.

 

Some of us have been fortunate in that we are supported by husbands, wives, parents, children, etc. who see beyond our beautiful appearances and realize how complicated our lives have become.  We are blessed to have these people in our lives.  With these loved ones who have complete understanding and compassion for us, it affords us the time we require to recharge.

 

Webster defines a man in the following manner.  As a male surpassing those tendencies that were once that of a beast.  My man, my husband has more than surpassed that.   He has been my rock.  He has been my fortress. 

 

Gary has held me up both physically and emotionally.  Never once has he mocked me.It is usually I who disparaged in my own mind.  It is me who has put down me.  No one has done more harm to me than I have.

 

When I switch on my moods.  And, in those moods I feel less than a woman and ridicule and scoff at myself.  It is during these periods where my husband encourages me.  He is so wonderful at retrieving me from the depths of despair that I easily throw myself into.

 

During these times he doesn't attempt to put things into his perspective.  He knows better.  He knows how to build up my confidence.  Gary tells me how needed I am.  He narrates my life.  He recounts my accomplishments.  He has this remarkable way of returning me to reality.  What ever is needed to do this, he has the tools to get the job done

 

When I feel ugly, he looks into my eyes and reminds me that he only sees my beauty.

 

This journal is a tribute to him.  For all of you who have told me that I have helped you.  You also have him to thank

 

On the 16th of this month will celebrate our 22 year of marriage.  Each and every day of these 22 years I have never had one moment where I regretted the decision I made to marry him in 1984.

 

He is my soul mate. 

 

God blessed me when he sent him to me. 

 

Gary is my lover, my friend and the man who holds out his hand when I am falling.

 

I can only hope that I make him as happy as he has and continues to make me.

 

 Because he has given me his best and deserves only the best in return

HOW I GOT MY SCREEN NAME

Why did you choose it?  How did you come up with it?  Does it mean something special to you?  This came from Val's journal........Val's Thoughts

My husband started calling me Baby a very long time ago.  Throughout the years it has progressed.  It was Babyeeeeee.  Then our friends would play along and call me TheBaabee (pronounced The Baa (like what a sheep sounds like) Bee.  We would all be numbered.  I was TheBaaBee #1, He was TheBaaBee #2 and so on.

I'VE BEEN TAGGED

I've been tagged by shadierush at Never Give Up.

I am supposed to list five weird things about myself.  Geez, my list definitely can be more than five.

1.  I have this thing I do before I know I am going to be admitted to the hospital.  I clean my house like a crazy lady.  No matter what my energy level is or how much I hurt I clean the house.  I suppose that I have this fear that I might not return.  And, that when people come visit Gary my house will be clean.

2.  Gary and I always think of the same thing at the same time.  Here is an example....... the other day I was cleaning my ears with Qtips.  It seemed odd that one ear is always dirtier than the other.  Then after Gary got out of his shower he came into the bedroom and said to me....... how come when you clean your ears one is always has more gunk on the Qtip than the other ear.

3. When Gary leaves for work in the morning and I am half asleep.  He comes and kisses me goodbye and every time I have to say to him.  Have a good day, be careful, I love you.  I think that if I don't say those three things something will happen.

4.  I eat frosting from the can.

5.  Like Dawn wrote, I had no problem feeding my dog from the same spoon or fork that I have been eating from.  I would feed the dog a piece of my food and then eat from it again.

Let's see who I can tag next.