Sunday, July 31, 2005

Sunday Morning

I'm tired this morning.  Not tired in the usual way. Well, that too, but I'm tired of everything that is going on now.  Waiting and wondering when things are going to be better again.  Or if they ever are.  Should I accept that my life is changed forever?  Or should I fight to return it to the way it was before?  My days are spent in my house lately.  The heat is horrible.  But the thing is keeping this A/C on all the time brings about a huge electric bill.  So what do I choose?  No one at the electric company understands that I need to keep the A/C on or otherwise I will most likely end up in the hospital.  I wonder if my health insurance would pay the electric bill.  LOL  It would be cheaper for them then for me to shut it off and end up sick and admitted to the hospital for a week.  Don't you think?

I  had an appointment with the pulmonologist last week.  The last pulmonary function test was as normal as it can be without being normal.  But that was in February.  He wants another one done.  Plus a sleep apnea study.  He is going to call for my recent chest X-rays and the CAT scan they did of my lungs during my last hospital stay.  He will study all of this and confer with my doctor.  I guess it's my PCP he will be talking with.  He suggested I lose weight, gee you think?  I explained to him that I was at my best weight (in a long time) when I got sick.  People were actually telling me at the time that I was getting too thin. Can you imagine?  Now, I have to lose this weight again.  He suggested weight loss surgery but I told him that I would like to try to lose it myself before I did anything as drastic as that.  He did tell me that it might be the only option for me considering all the meds I am on and their side effects.  Some increase my appetite (hence the weight gain).  We will revisit this subject in a few months after he talks with all of my other "Ologists".  I have to decide if I am thinking about this surgery because of the way I will feel afterwards.  Is it to feel better physically or emotionally?  I suspect it's both.  But that decision is a long way off. 

Have a wonderful Sunday,

Friday, July 29, 2005

This week's promise

Guess what?  This came to me at just the right time.  I receive a weekly email and they always seem as if they are mean just for me.  God's Daily Promises 

This week's promise: God helps those who help the poor

Can the poor be happy?

God blesses you who are poor, for the Kingdom of God is given to you. God blesses you who are hungry now, for you will be satisfied. Luke 6:20-21 NLT

The Happy Ones

Have you ever met someone who said, "I really do not want to be happy. Happiness might be okay for some people, but it's really not for me"? Neither have I. That's because deep down inside, we all want to be happy.

In what we know as the Beatitudes, Jesus described how we can be "blessed," which means "happy."

What did Jesus mean when he said the poor would be happy? Does poverty make us more spiritual and wealth make us less so? Are we to believe that the fewer possessions we have, the more godly we become?

No, He doesn't mean that at all. The first beatitude simply promises the person who has nothing that possessions are not what matter most in life. What really matters is what lasts for eternity—and possessions don't.

The problem with those who own a bunch of stuff is that they tend to become preoccupied with it.

Our Lord emphasized four essentials for true happiness: faith in God, love toward others, honesty with ourselves, and obedience toward God. Jesus is telling us, "Don't envy those who make spiritual compromises. Though you may not be rich in this world's eyes, you have true riches. And I promise you this: You'll be the happy one."

Adapted from
Breakfast with Jesus by Greg Laurie (Tyndale House) p 195

Monday, July 25, 2005

Monday Morning Question

Monday Morning Question:

If you had to pick something that has really enriched your life over the past year, what would you say it is?

My husband and I will be married 22 years in January.  He is an amazing husband.  My answer to this week's Monday Morning Question is .........

My husband's selfless caring during this past year.  My illness has seemed to become more intense during this time.  There are days/weeks that I am unable to be the wife and mother I want to be.  Gary takes care of me and our family.  He does the jobs that I can't due during this time.  He holds me when I cry.  After almost 22 years of marriage he still looks at me like the young woman he married.   And, for that my life is enriched.

Saturday, July 23, 2005


I just wanted to say THANK YOU to all of you who have given me wonderful supportive comments to my entries these last few days.

I have been no negligent in reading other's journals.  But my prayers are always with you.

Love you all bunches, Lu


I have an appointment with the Pulmonologist next week.  I'm a little afraid because the doctor in the ER told me that I had the beginning of Emphysema.  This Pulmonologist has a copy of my Pulmonary Function Test.  Now the thing is that my rheumi also got a copy of this test and told me it was fine.  I'm wondering if Emphysema can be diagnosed through this kind of test.  Also, the tech that did the test told me that it wasn't fine.  Plus at the hospital in the ER I had an X-Ray and a CAT Scan.


I've stopped smoking (well mostly).  I can honestly say that I don't smoke every day.  Once in a while.  It's so very hard to stop and I do believe that I am doing a great job at it so far.  I think that I need to keep the patch on all the time.  That might help.


Anyway, I keep thinking about my father who suffered so much with Emphysema and COPD.  I always boasted that my lungs were fine.  I always said that my Lupus never affected my lungs.  I thought it was odd because I knew others who never smoked and had pulmonary problems.  Well here I am scared out of my whits.  It's amazing isn’t it?


I can hardly walk up the stairs without feeling extremely winded and my heart palpating so hard.  One would think that I would never put a cigarette in my mouth again.  I am trying I really am.


Well, I will report back after my visit.


Yesterday all of a sudden I got a horrendous headache.  It's been a good week or so.  Now this headache has me incapacitated.  What is it that Loretta calls it?  Mabel the Migraine Monster.  Yup, that's it.  Yesterday I was taking Fiorcette every 8 hours and it was knocking me out.  Today it's not as bad but I don't know what to do as far as taking the Fiorcette in fear that this monster will return.


A Lupie never knows what their day will be like when they wake up.   Today I am in pain as well.  But I am not going to let it get to me.  Who said it?  I have Lupus but it doesn't have me.  I don't recall who it was but I'm going to try to think that way today.


Lupus (and everything else I have) has changed my life so.  From the day I had my first stroke my mindset has never been the same.  It was the day before my 46th birthday.  And, it's funny because each May 13th I get an odd feeling.  Like something is going to happen to me again.  One never knows what Lupus is going to bring.  Again, someone wrote that when you suffer from a chronic illness ....... a headache is never just a headache ........ leg numbness is never just leg numbness.  You always need to get these things checked out.  I can't help but think that my illness is progressing.  Maybe I have a week or twothat I feel fine and then BAM things start upagain.  Last time itwas the GI Vasculitis acting up.  Now it's the Cerebral Vasculitis.  All I can do is take the meds they give me and hope for the best.


I worry that one day my family will say that they have had enough of me.  Gary keeps telling me that when he married me he married me ....... In sickness and in health.  He has been so wonderful taking care of me.  But I often wonder what his life should be like now?  What our life should be now?  I look at myself and see a tired, ugly, overweight me.  He tells me that he still sees me as a beautiful woman.  How amazing is he?  I have been blessed to have him as a husband.  Thank you Baby!!!  Thank you for your patience, for your caring and most of all for your love.  I love you dearly.


Friday, July 22, 2005

Is God not hearing you?

Is God not hearing you?

And the LORD said unto Moses, Wherefore criest thou unto me? speak unto the children of Israel, that they go forward.  Exodus 14:15

When God Waits
There are a lot of why questions that we lift up to God. Every day people are looking to heaven and crying out in frustration, "Lord, why aren't you doing something about this? Why is this happening to me?" We saturate the airwaves with the why questions of life.

I'm convinced that God has one answer for almost every one of those questions. He says, I'm just waiting on you.
When Moses and the Israelites stood on the edge of the Red Sea watching the Egyptian army close in on them, they cried out to God in fear. They began praying that God would somehow rescue them. And look what God said: "Tell the people to get moving!" (Exodus 14:15). To paraphrase, "I'm just waiting for you."

Too often we spend our days waiting for a miracle. When trouble comes, we cry out to God for help. When things don't move fast enough, we blame God for taking his time. And all the while God is saying to us, I haven't gone anywhere. I'm just waiting on you.

And what is it that God is waiting for? Often he is waiting for us to lay aside our own agenda and trust him.…Whenever God waits, he waits for a purpose.

And when we finally come to our senses and do the thing that we know he wants us to do, he moves with a vengeance. The Red Sea parts, and things start to happen.

From a devotional thought by Frank M. Martin in  Embracing Eternity (Tyndale House) p 289).

God's Daily Promises 

I'm often confused trying to think what God wants me to do.  It just dawned on me that it's sort of like Newton's Fourth Law of Motion.  "For every action, there is an equal and opposite reaction."

It's just like when a bird flies. A bird flies by using its wings. When it flies it flaps its wings making the air go downward. The air reacts by pushing the bird upwards. The size of the force on the air equals the size of the force on the birdFor every action, there is an equal and opposite reaction. Action-reaction force pairs make it possible for birds to fly.  Or for anything to move.

You have to do your part. That's all God is waiting for.  What is your part?  You are the bird and God is the air. I'm not saying that I believe air is God or A God.  What I am saying is that our actions are what God is waiting for.  We have to do something, God doesn't want us to sit and wait for things to happen.


Thursday, July 21, 2005


I am pretty happy today.  I found out that I have a date for my SS Hearing appeal.  I go before the Administrative Law Judge on September 8.  This is amazing to me because my attorney told me that it would take a year.  I only filed my appeal in April of this  year.  I did contact my Congressman just to be able to have someone find out information for me. Things seem to be looking up for us financially.  Hubby will be starting a new job in a few weeks and if I get approved we will finally be financially solid.  We won't be rich by any means but at least we can pay our bills on time and buy food without having to choose to buy foold or pay the electric bill.


I was always feeling depressed because of what my illness did to us in this regard.  Plus I always thought that by this time in our lives things would be better for us.  I had a career that I loved and was excelling at.  My children were getting older.  And Hubby and I would be able to start enjoying each other's company again. Then I got stricken with this stupid disease and our lives took a tumble.  Within months we depleated whatever savings we had.  Then we had to start selling our stuff off.  We had to borrow money from my Mom.  It hurt to tell my children that we couldn't afford this or that when they asked for necessities.  I blamed all of this on my illness and hated Lupus for doing this to me.  I still hate Lupus.  I still am in pain and experiencing other ramifications caused by the auto immune process, but at least we can have a little peace of mind.  Please pray for me as my hearing date nears.  I am not even that concerned about any back money that SS might pay me (although it would be nice to be able to return some money to my Mom, not that she expects it back).  I would just be happy to receive a check every month.  I would love to be able to just pay for the groceries when I go to the supermarket and not have that pile of stuff lined up at the end and not be sure I can afford them.  Being able to pay my rent on time would be so nice.  I'm sure my landlord will be happy too. 




Wednesday, July 20, 2005

Sunday was a special day.  I got to visit with some of my Lupie Friends.  Two I had already met many times (Donna and Hilja), but it was exciting to get to met the Betty, her son Jesse and Gracie.  The day was filled with laughter and fun!  Here are some pictures Hubby took of us.

Saturday, July 16, 2005

It's sad being alone most of the time.  Like you don't even use your voice.  I'm very angry at being sick.  I do need to build up my energy and get my life back in order.  I'm just tired of all of this.  And, it's up to me to do something about it.

Monday, July 11, 2005

Monday Morning Question

Monday Morning Question:

How did you find out about AOL Journals and come to start your own?  What made you want to start a journal? From Krissy's Journal

I got the idea from LORETTA'S JOURNAL .  Loretta is a great online friend and she started her journal and told me it was a wonderful release for her.  So I started my own.  She was right.  Always is, I call her my "Wise Friend."  Because Loretta is so insightful and always full of wonderful support.  Of course, she is because she is not only kind, considerate and loving but she is a licensed Social Worker.  So she has the entire package.

I love writing in my journal, although some times I am not as diligent as I should be.




Sunday, July 10, 2005


Tonight I sat and cried.  I cried because I cannot stand being

in pain any more.  I cried because each and every pain

is blamed on Lupus, etc.  I cried because there is nothing that

can be done to alleviate my pain aside from medicating myself

and becoming nothing more than a shell of the woman I used

to be.  I cried because I am angry.  But, mostly I cried

because I finally said, "Why Me?"  I thought I was above this

kind of thinking.  I believed so much that I could handle this. 

Tonight I am having a very hard time with what is going in my

health life.  What should I complain about?  What should I tell

you about?  Should it be the constant joint pain?  Or how

about muscle pain?  I could tell you how paralyzing my fatigue

is sometimes.  I might even be able to say I have a pain in my

head.  Let’s talk about the pain that I still have at the site of

my inguinal hernia repair.  All of which is not alleviated by my

“Big Gun” meds any longer. 


So what’s next?  There has been talk of contacting a pain

management specialist.  “They know how to control your pain.” 

My PCP says.  My answer to him was ……… “What could this

kind of doctor give me now?  I have already been prescribed

morphine.  What’s next?  Heroine? I’ve tried that I

 Dilaudid is synthetic heroine.


I’m not usually so down trodden, it’s just getting to me

tonight.  Plus I am anxious about going to the Coumadin

Center in the morning.  Remember on Friday my level was way

too high.  I have a feeling I will be too low on Monday.  It’s

just the way it is, this happens all the time.


I have not smoked.  I want to smoke.  But I believe that if I

can stop something from happening to my body I WILL do it. 

There is so much going on that I have no control of, I need to

do this.  I don’t know how it is for others.  I only know what is

going on in my head.  I put the patch on when I remember. 

Mostly I am going cold turkey.  And, it’s hard, it’s very hard. 

But it is getting easier.  Hours will go by before I even think

about a cigarette.


Boy am I a bummer tonight.  I’m sorry, I really am.  I think I

just need a good night’s sleep or someone to explain to me

how they can fix these things.  Pray for me tonight please. 

I’m feeling hopeless which is pretty stupid because there are

so many others in this world whose health ismuch worse than

 mine. Pray that I remember that once again.


Good Night My Friends......... I'm praying for you too. 


Weekend Assignment #67: Bad Movie Marathon!

Weekend Assignment #67: Bad Movie Marathon!

Weekend Assignment #67: Bad Movie Marathon! Share your favorite bad film of all time. Tell us why you love it so.

Mine is Pretty Woman........ Starring Julia Roberts and Richard Gere. It's a love story.  Sort of like a fairy tale, like Cinderella.  I found this forum and it's amazing how serious people are.....Movie Cat's Pad @ #3561.1  It was just an entertaining movie as far as I am concerned.

Extra Credit........After Vivian bought all new clothing and didn't look like a hooker anymore she went back to the store where the women wouldn't help her and she said.

I was in here yesterday, you wouldn't wait on me. The woman in the store says something like Oh. But Vivian looks at her and says........You people work on commission right? The store woman says, Yeah and Vivian goes on to say......Big mistake. Big. Huge. I have to go shopping now!

I just love that line

Friday, July 8, 2005



I guess I am feeling okay?

 I put a question mark after that statement because I

really don’t know how I am feeling.  It’s been one of those

weeks and I have a feeling that I am going to flare big

time.  I’ve been so very tired but unable to sleep at night. 


Of course there is the pain …… joint and muscle pain.  I

have been living on my “Big Gun” meds.  I don’t like it but

 I have no choice when I start feeling this kind of pain.

 (I really wish that they would legalize the use of medical

marijuana! But that’s for another journal entry.)



So, I go to get my coumadin levels checked today and

my level is way too high… 8.6.  As we all know my target

range is 2.5 to 3.5.  I’m like more than double what I am

supposed to be. I got the lecture from them as to what I

should be on the look out for… abnormal bleeding from

any orifice, vision changes, and headaches.  I have just

one question.  What is considered abnormal because I

live with these things almost daily?  And, you do know that

at around 5:00 or so I started to get the most unbearable

pain in my head.  It felt like someone hit me on the head

with a hammer.  Nothing would work to take the pain

away.  I took two Tylenol 4 ……… nothing …….. Drank

some green tea because I need to do the Vitamin K thing

when my levels are too high. Nothing.  I took my nighttime

meds (holding the coumadin) plus another two Tylenol 4. 


Now the pain is bearable.  I hate taking the “Big Gun”

meds because they screw me up big time.  My sleep is

going to be screwed up and I am going to want sweets. 

Sort of like the munchies.  But I really have no choice

when I feel like this.



I’m really doing well with the NO SMOKING.  I want one but

really can’t imagine smoking.  I really want to breathe. 

Still can’t walk far without gasping for air and having




Tomorrow is Lauren’s graduation party.  It’s a party for her

and her friends.  Hubby is going to BBQ.  That should be a

blast.  After tomorrow night I canpass out and not worry

about any more events.  I am so sick sometimes that I feel

like my children miss out on stuff.  I a so happy that Lauren

was able to go to her prom and I could do all the Mommy

stuff for her.  Her graduation was great.  When I scan her

picture I’ll upload it onto here.  She really looked

beautiful.  She is cleaning up the house as I type.




Well, good night for now.  I am praying for all my Lupie

buds and for all you whoare reading my journal.  Thank

you for your wonderful comments.





Wednesday, July 6, 2005

Now no chastening for the present seemeth to be joyous, but grievous: nevertheless afterward it yieldeth the peaceable fruit of righteousness unto them which are exercised thereby. Hebrews 12:11 

Still not smoking..........

Monday, July 4, 2005


I know that I haven't been writing much about me lately.  I'm having a hard time putting stuff into words.

The good news is that I  have been smoke free for about one week.  Had to stop, there were no if's, and's or but's about it.  My last visit to the ER was not a pleasant one.  I was having a hard time breathing and my heart was pounding.  The hospital doctor ordered every test imaginable to rule out a pulmonary embolism.  Considering my history with strokes and antiphisiploid syndrome he said he just had to check.  Turns out I was having an asthma attack and had some fluid in my lungs.  Well, that's what they told me in the ER.  I was admitted and after they had time to study the tests taken, it was determined I have the beginning of emphysemia.  Except that I was discharged by my primary care physician before the pulmonologist got there to see me.  I was given a puffer.  My rheumi gave me the name of one he recommends.  Okay, so here we go with yet another "ologist" and more meds.  Just what I need.

Friday, July 1, 2005