You guys are just wonderful.  Thank you so much for your words of support and comfort.  Your prayers for me have been answered.  The lump on my breast is some kind of fatty tumor.  The sore (which is healing now) turned out to be some sort of cyst.  It just so happens that when I injured myself it was on the exact spot that I had a cyst.  So, that is why it looked so ugly and because of my prednisione and immunosuppressant use, it took such a long time to heal.

I am so happy.  It is such a weight off my mind.  I wasn't handling this well, I was very afraid.  Now, I am so thankful.  God answers prayers.  What better time than right before the celebration of His birth.

Mom is coming up for Christmas, I am so happy.  She will be here on Monday.  I'm going to take a trip to the airport with our friend Pat.  He is coming with me for moral support.  It's not a very long drive but I can't do it alone.  Maybe he will drive.  That would be even better.

We are going to have a wonderful and quiet Christmas.  We will stay home.  I'm going to put up a huge gravy (for the non Italians - tomato sauce).  I am going to pull out all the stops.  I will be be putting sausage, meat balls, pieces of beef and pork and braccoli.  This gravy will need to cook for hours but, if I must say so myself, I make a good gravy and the effort is worth it.  We'll probably have stuffed shells or manicottis.  Maybe even lasagna.  Since Mom will be here we will be making three colored cookies.  They are made with almond paste.  Maybe even a ricotta cheese cake.  I am so excited.

Most of my shopping is done.  I shopped online this year.  Tonight Gary and I will go over to the shopping center.  There is a Target there and I just have to pick up a few odds and ends.  Then we will go to Home Depot.  I'm going to buy a new area rug for the living room.  But first we will stop at Applebee's for dinner.

This entry is much better than my last few.  I am pretty happy and looking forward to the holiday.

Again, I want to thank you all.  Your comments and emails really lifted my spirits.

Thank you so much.

 

I

I'm trying not to let my emotions run away with me.  But I am having a hard time of it.  Life just can't be normal.  How I wish for a simple existence without any complications.  I'm scheduled for a momography and ultrasound on Thursday morning.  Aside from the wound on my breast, I've found a lump.  Keep me in your prayers.

Who would want to be around me lately? I wouldn't if I had the choice.

It's been a very emotional couple of weeks for me.  As I begin to realize that I have limitations.  I am trying very hard to accept this.

I had to go to my primary care doctor on Friday because I have a wound on my breast that just won't heal.  I've had it for just about three months now. I injured myself (don't laugh) by getting my breast caught between two laundry baskets. THREE TIMES Two of them were on the same exact spot and this is the wound that is not healing.  My doctor said I needed to get to see the breast surgeon right away, so I have an appointment tomorrow afternoon.  The wound is very ugly. Raw.  It's like a quarter sized crater.  It's oozing clear liquid.  He said that most likely it's because of the steroids and immunosuppressants that I am taking that is hindering the healing process.  Boy does it hurt.

I was also told that I have a heart murmur.  Apparently it's been there all the while.  But, he wants a echo cardiogram done just to check it out.

As the phrase goes....... I AM SICK AND TIRED OF BEING SICK AND TIRED.  It's gotten so that I cannot walk up the stairs without gasping for air.  And, when I settle down I have a hard time regaining a good breathing pattern.  It's not my lungs, they are clear.  He believes its the murmur.  Thus, his request that I get an echo.

My legs are causing me a lot of grief.  Horrid pain mostly in my right leg.  From hip to toe.  When I get up from a sitting or laying position and try to walk it's worse and I actually feel like I have to drag that leg.  Just the motion of walking makes me weak.  So I am breathless and in pain.  Nice combo.

I've been reading all the new journal events that come my way and I feel very jealous of most of you.  Your journals are filled with joy.  Mine is filled with woe.  I wish it was different. There is nothing interesting to write about.  For my days are all the same.  I get up in the morning and each day is the same as the day before.  I have become afraid to go out. Any attempt at shopping or lunching with friends leaves me devastated because I end up sweating from my head to my waist.  I dread it that I have to get in the shower.  That simple act drains me for the entire day. After only a few moments I have to look for something to hold on to.  I guess it's time to install hand rails.

I walk with a cane.  I have a prescription for a walker but haven't gone to get one yet.  I keep thinking, what's after the walker?  A wheelchair?

I am so sorry that my entries are so bleak lately. Maybe once we get the Christmas tree and the presents are laid out underneath it my mood will improve.

Can you believe that I am going to turn 50 next year.  I think part of my somber mood is because I have lost a childhood friend.  Not by death, but by her choice.  She simply said that she has lost interest in me.  It's been almost two years since I have spoken to her.  We were born a week apart.  We should be turning 50 together, but I am left missing her.  I wonder if she ever thinks of what happened.  Or if she misses me as much as I miss her?

Our lives change.  We have no control over most of it.  I am feeling very lost and isolated.  I want so much to get myself out of feeling like this, but I just don't know how.

THANK YOU

Thank you everyone who wrote loving and encouraging comments to my last entry.  Special thanks to Guido who sent others to read and comment too. 

Thanksgiving is approaching and despite this horrid flare, I have much to be thankful for.

I have a loving, caring, encouraging and amazing hubby who loves me.  He always says.... IN SICKNESS AND IN HEALTH

I have two amazing children who have grown into amazing young adults.

I have a mother who is my confidant and pray warrior.

And, I have loving friends both in both real life and in my cyber life.

Thank you all!

Hospital Stay

I just got out of the hospital this morning.  Went in through the ER on Wednesday evening. I asked him to drive me there.  I was having a series of seizures.  They were unlike any that I have ever had.

It was really a productive hospital stay. They took me right into the back. The security guard wheeled me right in.

My body was contorting.  Making strange movements.  Nothing they pumped into me stopped this strange movements thing from happening.  Until finally they shot me full of ativan.  After four days of observation and testing, it was determined that because of the extreme pain my body was experiencing my body couldn't take anymore and attempted to compensate by seizing.  I was aware of everything through all of this.  Apparently that is possible.  I thought differently, but was told that this was, indeed,  possible.

I was finally sedated enough to stay still long enough to get a CAT scan and other tests necessary to find out  what was going on.  My seizure med was increased again and they increased the pain patch.

I ended up tripping or something.  My right leg gave out while I was getting into bed.  I tried to avoid falling and ended up doing something to my leg.  Thank God I didn't break a hip.  They wisked me right to Xray.

I am home now and attempting to get used to this new higher dose of pain patch.   It makes me tired.  But, it does it's job.  Except for helping my right leg pain. I'll take this.  It's better than the pain I was experiencing before I went into the hospital

Hugs, LuAnne

 

 

It seems that all I do lately is complain about the way I feel.  I just can't get back to some sort of tolerable existence.  This is also affecting my mood.  I am snippy and short with people.  I am in so much pain I don't know what do to or how to deal with it.

A mouse looked through the crack in the wall to see the farmer and his wife open a package.   What food might this contain?  The mouse wondered. He was devastated to discover it was a mouse trap.

Retreating to the farmyard, the mouse proclaimed the warning: There is a mouse trap in the house! There is a mouse trap in the house!"

The chicken clucked and scratched, raised her head and said, "Mr. Mouse, I can tell this is a grave concern to you, but it is of no consequence to me.   I cannot be bothered by it."

The mouse turned to the pig and told him, "There is a mouse trap in the house! There is a mouse trap in the house!"  The pig sympathized, but  said, I am so very sorry, Mr. Mouse, but there is nothing I can do about it but pray. Be assured you are in my prayers." 
   
The mouse turned to the cow and said "There is a mousetrap in the house! There is a mousetrap in the house!"  The cow said, "Wow, Mr. Mouse. I'm sorry for you, but it's no skin off my nose."

So, the mouse returned to the house, head down and dejected, to face the farmer's mouse trap alone.

That very night a sound was heard throughout the house -- like the sound  of a mouse trap catching its prey.

The farmer's wife rushed to see what was caught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught.  The snake bit the farmer's wife. The farmer rushed her to the hospital, and she returned home with a fever.  

Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup's main ingredient.

But his wife's sickness continued, so friends and neighbors came to sit with her around the clock.  

To feed them, the farmer butchered the pig.

The farmer's wife did not getwell; she died.

So many people came for her funeral, the farmer had the cow slaughtered to provide enough meat for all of them.

The mouse looked upon it all from his crack in the wall with great sadness.

So, the next time you hear someone is facing a problem and think it doesn't concern you, remember -- when one of us is threatened, we are all at risk.

We are all involved in this journey called life. We must keep an eye out for one another and make an extra effort to encourage one another.

Remember that each of us is a vital thread in another person' s tapestry.  Our lives are woven together for a reason.

One of the best things to hold onto in this world is a Friend.

Okay, try this.

http://kevan.org/johari?name=thebaabee

TIRED

I'm tired today.

Physically tired

Emotionally tired.

Tired of this illness that has caused so many changes in my life.

Tired to others telling me that everyone gets tired.

Tired of not being able to be the me I was before I got sick

 

FRANKENSTEIN

 

This is an interesting tag going around blogs recently. 

 

I want to see what you guys are reading!! 

 

Go ahead and try this!! 

 

Here are the instructions...

 

1) Grab the nearest  book.

2)   Open to page 123.

3)   Find the fifth sentence.

4)    Post the text of the next four sentences along with these instructions.

5)    Don't you dare dig for that "cool" or "intellectual" book in the back  of your closet!  I know that is what you are thinking!

6)    Tag four or five people.

 

 

 

Frankenstein by Mary Shelley

 

“My days were spent in close attention, that I might more speedily master the language; and I may boast that I improved more rapidly than the Arabian, who understood very little, and conversed in broken accents, whilst I comprehended and could imitate almost every word spoken.

 

“While I improved in speech, I also learned the science of letters, as it was taught to the stranger; and this opened before me a wide field for wonder and delight.

 

“The book from which Felix instructed Safie was Volney’s Ruins of Empires.  I should not have understood the purport of this book had not Felix, in reading it, given very minute explanations.

 

Now who to tag......

Nah, just do it everyone.

 

Hugs, Lu

Good morning my friends.  I hope this entry finds you all feeling well.

I'm muddling through my life lately.  Most of the time not knowing which way is up or which way is down.

Lupus has been playing havoc with my body.  Mostly my brain.  I was in the hospital last week for a few days because I have been experiencing dizzy spells.

This hospitalization started out pretty funny because I got sick when I was right outside of the hospital on my way to visit the pain management doctor.  I had parked my car in the lot and attempted to walk up the hill to the hospital.  I couldn't make it and started to become dizzy.  I managed to get to about 100 feet from the door when I lost my breath and started to feel faint.  I sat down thinking that I could rest a bit and then go on.  I couldn't.  I called 911.  This is the funny part.

911 Operator:  What is your emergency?

Me:  I need help.

911:  What is wrong?

Me:  I am very dizzy and cannot breathe (I was gasping)

911:  Where are you?

Me:  About 100 feet from the entrance of SVMC SI.

911:  What street are you on?

Me:  (Gasping and crying at this point)  I'm on Bard.

911:  What are the cross streets?

Me:  I have no clue

911:  Look at the street signs.

Me:   I'm sitting about 100 feet from the hospital.

911:  Can you get someone to help you?

Me:  That is why I am calling you.

911:  What is the cross street?

Me:  Click, I hung up

By this point the security guard had spotted me and brought over a wheel chair for me.  He brought me to the ER.

I was seen right away.  They have this triage thing that they do.  One moment and you will be taken in.  Okay.  My head is spinning and beginning to feel as if was going to explode.

My cell phone rings.  This is EMS, where are you? 

Me:  I am in SVMC ER.

EMS:  You didn't wait for the ambulance?  (was this a question or not, I couldn't figure out).

Me:  911 said they couldn't send an ambulance.  So I got help elsewhere.

EMS:  okay

Me:   CLICK

I hear my name.  And, attempt to wheel myself in the direction of the voice calling my name.  But, I am going in circles.  The nice security guard comes to my aid.  He goes in and finds out that they didn't call my name.

I wait a few more moments and hear my name again.  He brings me in.

All the while I am trying to keep from vomiting because me head is hurting so much.

They do their stuff.  EKG, blood, neuro exam.  I fail the neuro exam.   Of course, I can't keep my head up and am very weak by this time.

The ER doc said my INR level was too high.  I'm being admitted.

I fall asleep.

Wake up to see I am being wheeled to go for a CAT Scan and Chest XRay.

It was as pleasant as an ER experience could be.  I ask for pain meds, I get it.  A big shot in my IV.  If I still have a headache, I don't care now.

I got in my room quickly and went back to sleep.  A nurse wakes me up.  She has a lot of papers and another big shot.

I was there from Tuesday morning to Friday afternoon.  My neurologist's associates come in and out visiting often.  My pain management doc makes a few appearances.  I'm treated well.

It ends up that I have been having increased seizure activity.  My seizure meds are increased.  I need to follow up with my neuro and they will do an MRI.  (They have their own MRI facility attached to their office.)

I am home, very tired.  With a faint headache.  They held my coumadin (jantoven) while I was there.  My levels are too low now.  I have to follow up with the coumadin center.

Hints for a pleasant hospital experience......

Send your nurse flowers while you are still in the hospital.  You become their favorite patient and they do stuff for you.

DON'T CALL 911 WHEN YOU ARE RIGHT OUTSIDE OF THE HOSPITAL, IT MAKES THE 911 OPERATOR CONFUSED.

As I read Loretta's journal this morning, I sobbed.

Not for Loretta, for she has an astounding emotional ability to move on.

I cried for me.

I cried for the loss I feel.

I am unable to see the fix.

How long can I go on fighting.

Not for my life.

But for the battle in my life.

And, what a battle it is.

I long hopefully to win the battle.  Just once in a while.

Which one?  There are so many that plague my existence.

Lupus has declared war on me.

But, there are so many battles.

My chosen battle is PAIN.

The issue is that I am unable to gather the troops.  To bring them together so that they understand what I need.  (the troops being the medical community).

I thought I was winning this battle. 

Well, I believed that I had found my general.  He went by the name of PAIN MANAGEMENT MAN.

I am just a soldier in this battle.

But, my general has no foresight.  He lacks compassion.

I sat sobbing in the chair across from his desk on Friday.

He spoke saying that he did not understand how I could still be experiencing pain.

He went on tosaythat the med I am currently on is equivalent to like 40 vicadin daily.

I asked him what his point was.  He said that maybe my lupus is flaring.

I said..........Duh.

His look was priceless.  His remark not so.

This may be a rheumatological problem, contact your rheumatologist.

I calmly spoke through my tears. Every word thought out carefully.  Despite my anxiety at that moment.

The words were difficult to come.  But, I managed to remind him of the reason I first came to see him.

You are a pain management doctor.  I have pain. I first came here to have you manage my pain.  Not to be given the pain medication speech.

Friday's appointment was an emergency visit.  I was told to bring the rest of my fentanyl patches with me.  I knew the reason for this.  So, they could ensure that I was not an addict.

The next scheduled appointment is for Thursday.

He asked to see the patches I had left.  Of which I had three left.

Which is the exact number I should have left.  That rules out the addict theory. 

And, don't think  I didn't remind him of that.

Then he had an epiphany.  He looked at the patches and then said....

You have the wrong patches.

Apparently it goes this way.  There are three kinds of patches for the dose I am on.

The name brand.

Two generics.

One generic sucks.

The other works.

I had the one that sucked.

His attitude switched.  He knew what to do to help me.

He said you need the sanyo patch.

AMAZING!

I became so angry at him.  Maybe my anger should have been directed to my pharmacist.  But, it was towards PAIN MANAGEMENT MAN.

I said, I'm quite happy about this at least.  But, you should have asked about this prior to your previous belittling speech.

I was so upset at his minimizing attitude.  Do I look like a drug addict?

I reminded him of what occurred during our first visit.  That I had asked for pain site injections.  I had voiced my feelings on wearing 75 mcg of fentanyl on my arm.

That I was hopeful that he would be able to effectively manage my pain.  That when I call crying, it's not because I am looking for someone to decry my feelings.

So, I left there with two prescriptions.  Apparently, 75 mcg is hard to acquire.  Pharmacists have difficulty ordering them.  I left to fill one for 25 mcg and one for 50 mcg.  But, not without his comment that I may have to pay out of pocket for them since my current Rx still has 6 days left.

LOL

The new patches work better.  At least I am not crying out in pain with each movement.

Pain will ever be my companion.

I should get used to it.

But, when the pain is so horrid, it's a hard task to accomplish.

So, I still cry.

Have lost the battle this week.

Not the battle on pain itself, but the battle with SUPER PHYSICIAN MAN. (or all of my physician's).

 

LONELY

I'm depressed.

There is no doubt about it.

I have no energy or desire to do anything.

Why?  Can I blame it on Lupus?  I dunno.

Partly, I guess.

It's such a vicious circle living with a chronic debilitating illness.

I am so very lonely.

 

Conundrums

I'm tired.

I'm always tired.

I can't always sleep.

If I did that I would spend all my time sleeping.

There is more to life than sleeping, right?

If I don't get the sleep my body requires then I won't be capable of doing all the more to life stuff.

Don't you just love conundrums?

Good Morning!!!

I know that I haven't been writing much lately.

I've been having some major cognitive events.  It's weird because it comes and goes.  I feel like I can't put a thought together and then I am ok.

Strange.

My hips are still not better.  There is no more reddness, but boy do they hurt.  My knee, which wasn't as bad still hurts too.

My feet and calves are swollen again.  And, I am still taking Lasix!

On a better note, I am having a lot of fun maintaining my EBay store.  It's called OCCUPY MY TIME.  Here is the link http://stores.ebay.com/OCCUPY-MY-TIME_W0QQssPageNameZl2QQtZkm.

I just love it.  Check it out.  I sell all sorts of nifty things.  I'm adding new stuff all the time.

Well, that's it for now.

Hugs, Lu

TRY THIS

I FOUND THIS IN DAWN'S JOURNAL.  I WOULD SUPPLY THE LINK BUT I CAN'T GET THE LITTLE HEART TO APPEAR HERE WHEN I TRY TO MOVE IT.  OH WELL.  CHECK OUT THE SIDE OF MY JOURNAL FOR THE LINK TO HER JOURNAL.

Anyone else want to do it?  Just copy and paste and change to your answers.
---------------------------------------

I Am  a wife, mother, lover, friend, sister, daughter! 

I Want  to live according to God's will.  It's not so easy, but having faith helps! 

I Have  the best husband in the world! 

I Wish  I never met Lupus. 

I Hate  Lupus.

I Fear  not seeing my children married with children of their own.

I Hear  the television in the background.

I Search  for peace of mind. 

I Wonder  why some things happen. 

I Regret   Felice not wanting to be my friend anymore.

I Love  my husband and children so much.

I Ache  when someone I care about hurts. 

I Always try to do what is right.

I Usually  fall asleep on the couch.

I Am Not  a mean person.

I Dance  less than I would like to.

I Sing  even though I can't hold a tune at all.

I Never  lie. 

I Rarely  get out.

I Cry  a lot.

I Am  hoping to move to South Carolina within the next six years.

I'm Confused  a lot.

I Need  to stop smoking.

I Should  lose weight.

TODAY

I am feeling very crappie today.  My legs are really hurting.  I think it's because I really didn't sleep much.  I ended up falling a sleep on and off on the couch sitting up.

But, anyway I have some stuff that needs to be taken care of today.  Lauren and her boyfriend painted her room over the weekend.  She needs a new area rug, a new bed, a computer desk and some sort of small entertainment center for her television, stereo and all that nifty stuff.  She painted the walls and ceiling white.  Not a stark white.  It's called frost.  I hate white walls, any kind of white.  The majority of my house is painted a color called Navajo white.  It's a cream color.  She painted the trim in her room purple.  Yup, I said purple.  That's what she wanted, so that's what she got.  It needs another coat.  You know what happens when you paint a dark color over white.

I am sitting here waiting for the girls that clean my house to get here.  They should be here a little after nine.  Yes, I hired cleaning people.  It is the best thing I have ever done.  They take care of cleaning all the hard jobs.  The kitchen, bathroom. The floors and walls.  All the dusting and polishing.  They even do the inside of my microwave and change the sheets on my bed. Plus they do an excellent job.  Hiring them lets me use my energy for other things.  Fun things.

I still cannot do the food shopping thing.  Yesterday Lauren and I ran to the little supermarket to pick up stuff for dinner.  We were only in there for about 20 minutes.  I had such a difficult time walking back to the car.  Thank God she brought the packages in.  Tonight I am making chicken in my counter top convection oven.  I love cooking in that and my slow cooker.  Makes my life a lot easier.  And, I can set it on the table and sit in a chair while I prepare meals.

I'm thinking that my legs and feet are swollen.  I really can't tell if they are or not. I did the thing where you push down on a spot and see what happens.  Nothing happens.  But they feel so tight.  My feet look enormous.  I have big feetbut they are not wide.  To me, right now, they look so fat.  Oh well, I will see what happens.

Please have a blessed day my friends.

THANK YOU ALL

To all of you who left comments for my last journal entry, I want to thank you.  I hope you know how much those words meant to me.  Each one of you left me very inspirational and encouraging messages.

It's so true that only those who have experienced this kind of pain and fatigue can understand. 

Although, I need to include my Hubby here as well.  He has been so amazing during the last few years.  When I thank him, he tells me that "There is no reason to thank him.  He married me in sickness and in health.  It's his job to take care of me.  Plus he loves me and this is what you do when you love someone."

Between him, my children and all of you out there in cyberspace my mood has improved and I am no longer hitting myself on the head and blaming me for all that has happened to me.

Whoever said that you can never know a person you meet on the net was so wrong.  You guys (even those who were sent here by Dawn....thank you Sweetie) do know me.

I am very grateful for all of you.  Thank you so much!

I AM A NUT JOB

Good Morning Kind Readers.

Recently it was explained to me that all I ever talk about is my illness and that I never have anything good to report when I speak to her.

This puts me in a quandary because I don't know who is being insensitive here.

Is is me?  Because this is pretty much the case.  I don't have any good news lately. 

Every time I turn around something else is happening to me.  Recently, it has been my back issues.

She told me that everyone has back problems and that mine aren't that special. Like I am trying to be "special."  Lord knows how much I wish I wasn't "special."  You see I used to go out every once in a while with a few of the girls on a Friday night.  It was fun to get out and I really wish I could do that again.  It was inferred that I have no motivation any more.  I was given examples of other people who have this or that and manage to get out and even go to work.

If me having to sit on the floor two Saturdays ago in Pathmark because my legs and back were in so much pain that I couldn't support myself upright any longer didn't make me feel bad, this conversation did.

Is it her that is insensitive?  As far as she is concerned, I am not the LuAnne that she once knew.  I am not the LuAnne who made her feel better when she was feeling overwhelmed.  I am not the same friend she once had.  It was even brought to my attention that I was avoiding her for some reason.

Am I giving in to the distress of my illness?  Am I using it as an excuse?  Gee, am I crazy for thinking this way.  Of course, a person like me who was very active before my illness came to live in my body, loves sitting on the couch most of the day.  I love making plans to get into the shower because having a shower takes everything out of me.  Who would not love to live this way?  Oh and who loves to walk around with a cane and use the scooters that the supermarkets provide for those of us who need them?  Aren't they just there for kids to ride on like a trip to the Go Cart Fun Center.

Yup, I like to live like this.  It is my choice.  When I was a little girl this is how I dreamed my life would be.  I dreamt that I would nap during the day.  I imagined that I would be unable to walk up the stairs from the laundry room.  That laundry would pile up for days. 

Little girls don't dream of their grown up lives to be like this.

What I dream about now is being able to hop in the shower, rush and get dressed and go about my daily life.

Why doesn't anyone get it?  We can't even use the "Invisible Illness" defense for this dilemma because I look like crap.

You know something that is very funny.  This same person (most people really) aren't able to cope with stuff that happens to them.  They get a headache and it's the end of the world.  Their doctor schedules a colonoscopy and they fret for days afterwards.  Take to their beds right after the camera goes up their butts.  Or, have a tooth pulled, capped or a root canal and they are complaining about the pain for days and days. Then they say to me, and you think you are in pain.  Amazing.

I get remarks that are so bizarre that it blows me away sometimes.  Here is one example...... Someone called and told me that they needed to have a fatty growth removed from their arm.  Their doctor scheduled this procedure six weeks later.  It was like a catastrophe.  The doctor was lax.  The doctor didn't know how much she wanted to get this over with.  Who was going to come to her house and help her with her family?  How big would the scare be?  All this after the doctor told her that there was no reason to do this procedure.  But because she whined and complained he scheduled it.

It amazes me.

I still haven't learned.  I still haven't learned to just say I am "okay."  I still believe that people really are concerned about my health.

The end result to all of this is that I am a nut job for believing all of that.

But, I still felt bad and my mood still changed.  I still cried.  I've already lost two friends because I am sick.  I guess I am on the road to losing another.

CHRISTIAN WAYS TO REDUCE STRESS

I received this via email from motherearthgifts@aol.com and thought it was worth including it as a journal entry.  You should also check out her message board at http://www.lupusmctd.com/.  It's well worth it.

 

CHRISTIAN WAYS TO REDUCE STRESS

 

An Angel says, "Never borrow from the future. If you worry about what may happen tomorrow and it doesn't happen, you have worried in vain. Even if it does happen, you have to worry twice."

1. Pray

2. Go to bed on time.

3. Get up on time so you can start the day unrushed.

4. Say No to projects that won't fit into your time schedule or that will compromise your mental health.

5. Delegate tasks to capable others.

6. Simplify and uncluttered your life.

7. Less is more. (Although one is often not enough, two are often too many.)

8. Allow extra time to do things and to get to places.

9. Pace yourself. Spread out big changes and difficult projects over time; don't lump the hard things all together.

10. Take one day at a time.

11. Separate worries from concerns. If a situation is a concern, find out what God would have you do and let go of the anxiety. If you can't do anything about a situation, forget it.

12. Live within your budget; don't use credit cards for ordinary purchases.

13. Have backups; an extra car key in your wallet, an extra house key buried in the garden, extra stamps, etc.

14. K.M.S. (Keep Mouth Shut). This single piece of advice can prevent an enormous amount of trouble.   

15. Do something for the Kid in You everyday.

16. Carry a Bible with you to read while waiting in line.

17. Get enough rest.

18. Eat right.

19. Get organized so everything has its place.

20. Listen to a tape while driving that can help improve your quality of life.

21. Write down thoughts and inspirations.

22. Every day, find time to be alone.

23. Having problems? Talk to God on the spot Try to nip small problems in the bud. Don't wait until it's time to go to bed to try and pray.

24. Make friends with Godly people.

25. Keep a folder of favorite scriptures on hand.

26. Remember that the shortest bridge between despair and hope is often a good "Thank you Jesus."

27. Laugh.

28. Laugh some more!

29. Take your work seriously, but not yourself at all.

30. Develop a forgiving attitude (most people are doing the best they can).

31. Be kind to unkind people (they probably need it the most).

 

32. Sit on your ego.

33. Talk less; listen more.

34. Slow down.

35. Remind yourself that you are not the general manager of the universe.

36.Every night before bed, think of one thing you're grateful for that you've never been grateful for before.

 

GOD HAS A WAY OF TURNING THINGS AROUND FOR YOU.

 

"If God is for us, who can be against us?" (Romans 8:31)

 

A friend

I’ve been thinking a lot about her lately.

 

I never believed it when people would write that friendships could end.  After all we had been friends for so long.  Over three decades.  How could something that lasted so long end?

But friendships can be lost   When long friendships are lost there is no way to find them again.  When our friendship ended I lost a part of myself.

During the last years of our friendship, it was mainly phone conversations.  Sometimes we would go for months.  But then when we were on the phone, it was as if no time had passed at all.

I still lament over the loss.  SometimesI forget and start to pick up the telephone to call her.  Then I remember and that is when my heart breaks all over again.

 

Because it all comes back to me.  That it was lost in an email.  No personal contact.  No chance to speak about what was wrong.  All I got was that she lost interest. 

 

I now know that friendships do not last. That friendships lose importance and wither away. I now know that there is always pain when you lose a friend.

 

I've been thinking about her.  I’ve been thinking that we have friends that come in and out of our lives.

 

I have also been thinking that nothing that happened with her could be explained.  I do have to give her credit for at least ending it.  And, as much as it hurt me, at least there was an end. But what happened still confuses me.

 

I used to go over our years of being friends.  Trying to figure out if it was my fault.  I know that in her mind it was something.  And, yes, we are never guiltless.  But, whatever had occurred was, in my mind, nothing major enough to dismiss a life long friendship

 

I still talk about the times we shared throughout the years.  But I have put her in a different place in my heart I don’t have to stop loving her or caring about her merely because she didn’t want to be in my life anymore?

 

If she called tomorrow and wanted to be friends again, I couldn’t.

Lonely and Frustrated

I'm still feeling quite lonely. 

There is really no one to talk to. 

No one to do stuff with. 

The other day when Hubby and I went grocery shopping I had to stop and sit down on the floor because my back and legs felt like they were going to give out.

I can't even get into a shower without this happening.

But, yet, I still try to do things. 

Although, this weekend after the grocery shopping fiasco, I felt very bad for myself. 

Hubby, delicately I might add, suggested that if I lost weight my back might feel better.  He is right.  I have gained so much weight in the last three years.  With all my other health issues, this weight gain could only make it worse.

I need to do something about this.  There are so many different weight loss options out there.  Weight Watchers?  Some sort of program like Nutrisystem?  Weight loss surgery.

What decision should I make?

I'll research all the options.

First, there is Weight Watchers.  With this program I have had a lot of success.  If you don't already know, before my illness got worse I had just lost over 100 pounds on Weight Watchers.  At that time I found it was very easy for me to follow their program.

I will probably choose Weight Watchers.  Maybe I might go today.

 

Lonely

I've been feeling very alone lately.  There is not much for me to do here.  The days just seem to melt into one another.  I don't feel depressed.  I just wish I was able to do more during the day.  That I had something to do.

Everyone here has some purpose.  Me, I can't seem to keep my eyes open past 7.

Good Morning

Lately I have been sleeping horribly. 

I have no trouble falling asleep.

Staying asleep is the problem.

This morning I was up at around 4ish.  I was very happy to see that NYPD Blue was on TNT.  So I got my meds ready and watched it.

I would love to get out today but I have no car.  Gary, Jr.'s car is in the shop so he must take mine to get to work.  That is more important than me going shopping and spending money.  Don't you think?  Especially considering the car repair will cost $790.00.  Working breaks and exhaust system are important.

Wilson, our new puppy, is doing well.  He has already gained 4 pounds (it must be more by now).  He still cannot go out for a walk where other dogs might be.  He is too young for his rabies shot.  Wilson has been sleeping in bed with us.  It works out well when I finally get back to sleep and want to sleep late.  He just lays there and waits for me to get up.  He is a good boy.  Except that he likes to nip at me.  I think he is teething.  We bought him a lot of toys so when he starts nipping we just give him one of his chew toys.  I'd include pictures except that I forgot the code to enter to add a picture in my journal and when I try to add a picture above my computer freezes.  Gotta have Gary, Jr. look at it.  Hey I just remembered the code, I think.

Tomorrow I have a rheumi appointment.  I am going to take the NYC Access A Ride there.  He wants to follow up with me since I was in the ER last week.  I am flaring and my electrolytes were very low.  The fentanyl patch seems to be working.  But fatigue has been a major problem.  Plus my skin is very itchy.

I'm  doing somewhat better emotionally.  Thank you so much for your comments and emails encouraging me.  As my mood above says, I am still feeling frustrated.  I guess that's okay.  It will pass.

Please pray forLoretta's Life with Lupus sister and mother.  Read her journal.  Also Karyl, Kathy and all of my Lupie friends.  They all have woes other than Lupus going on.

Thank God our central air conditioning is fixed.  Thank God that hubby is talented and can fix stuff.  The heat was really giving me a hard time.  I was being a real horror too.  Just couldn't take the heat. The temp in the house read over 90 degrees.

Have a wonderful day!

I'm Back

I’ve been MIA.  Not only from writing in my journal, but from my life

 

Lupus is a torturous illness.

 

Lupus doesn’t allow you to live your life.  In my mind I make plans to do stuff but my body does not allow me to put those plans into actions.

 

Living with Lupus has changed my entire life.  There is a saying………”I have Lupus, but Lupus doesn’t have me!”  I’ve been trying to live by that quote.

 

It’s amazing how your life can change.  One day you are working.  You’re body is fit.  You go and do.  Then one day things are entirely different.

 

There are so many things I want to do.

 

Work in my garden.

 

Cook real meals for my family.

 

But, most importantly, be able to get up in the morning and hop out of bed, get into the shower and go about my day. 

 

I can’t do those things.

 

So for the past few months I have been feeling sorry for myself.  It’s the summer.  A time when I would be doing stuff.  I don’t wallow.  But, I am worn out.

 

My pain has been under control for the past day or so.  This is only because I gave in and went to see a pain management specialist.  Dr. P. prescribed a fentanyl patch.  So far so good.

 

Although, my exhaustion is running rampid.  I am determined to fight this.

 

I’ve made concessions. 

 

Instead of planting and tending to my backyard garden, I’ve been container gardening. 

 

I’ve been cooking meals in a crock pot or the convention oven.

 

I take my shower before I go to bed in the evening.  Even though I prefer that freshly showered feeling in the am, it’s just not an option.

 

I hired someone to come in and clean the house.

 

I delegate chores now.

 

I order dinner more often.

 

I buy ready made food.

 

These were things that I never did.

 

I have made other concessions too.  I give in to the fatigue and nap when I need to.  I pace myself when doing stuff.

 

I’m tired of being sick and tired.  I’m hating Lupus.  But this is what my life is like now.

 

I have to make the best of what I have been given.

 

Loretta, after writing in her journal about how she felt and what it was like to live with lupus, said that she wasn’t complaining…….simply stating the facts.

 

I was never one to complain.  Though I do now.  I don’t like this new personality trait.

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.