Tuesday, March 27, 2007


As many of you know I will be moving in a little over three months.  There is so much to do.  And, with my current health condition it's going to take a toll.  I'm going to have to turn off all of my journal alerts for a while.  Please don't get angry at me.  I'll be checking when I can.

Wish me luck, Lu

Monday, March 26, 2007

What's in a name?

I found this meme/game in Dawn's Journal.

Use the first letter of your name to answer each of the following... They MUST be real places, names, things... 

NOTHING made up!  If you can't think of anything, skip it.

You CAN'T use your name for the boy/girl name question.

Your Name:  LuAnne

Famous Music artist/group:  Led Zeppelin

3 letter word:  Lip (good for kissing)

Color:  Lavender

Gift/present:  Lladro

Vehicle: Dawn said, DeLorean.  I actually met him while working at a PR firm in the very early 80's.  Actually while he was dating Christina Ferrera he sent me roses.  My "L" is Litecraft, which is an RV

TV Show:   Loretta Young Theater (I was about four or five and after my Mom put my sister in for a nap (she was a baby and Mom was pregnant with my brother) we would lay on the couch.  She would lay on her side and I would cuddle up and rest my head on her legs.  I remember sometimes her legs were stubbly, LOL.  It is one of the best memories I have.

Country:    Luxembourg, it's surrounded by Germany, France and Belgium.

Boy's Name:   Louis (my paternal grandpa's name) I loved him dearly

Girl's Name:   Lauren, of course.  My precious daughter

Alcoholic drink:  Lucasta Martini (a yummy blend of vanilla liquors)

Occupation: librarian (actually forensic librarian)

Flower:   Lilac

Celebrity:    Liam Niesen

Food:       Lollipop

Something found in a kitchen:   Linens

Reason for Being Late:  Lupus

Something You Shout:   Lupus (actually an "F" word goes before Lupus)

Try this, it's fun.

Sunday, March 18, 2007


I've checked off ANXIOUS on the mood indicator above, but I am feeling so many things.  Happiness, excitement, joy and fear.  The fear comes from the unknown.  We are in New York and there is so much for us to do to get down to South Carolina.  Our tentative move date is on or around the 15th of July.  Before that Gary and I need to go down to finalize some stuff.  Aside from the construction aspect, we need to secure temporary housing.  We have a few choices for that.  We can split the family up.  Some of us could live with my Mom and some of us with my brother.  I am pretty sure that is not how we are going to do it.

We can rent a small apartment and just rough it for the approximately six months the construction will take (I'm thinking more like 7 or 8 months).  Or, we can take over my Mother's apartment and Mom can go live with my brother for a while.  This may be the easier of our choices.

I would prefer to buy a small trailer and move it onto the back of the property and live there.  Mom says that's how a lot of people do it.  But, there seems to be some issues with that.  We need to research that.

Another issue that needs to be taken care of is the matter of my medical care.  Here in NY I see about 8 different medical professionals.  Finding new doctors is overwhelming me.  Mom's friend has a rheumatologist that she sees.  I may just start out with this doctor and then if need be change.  One good thing is that right in the town of Easley there is a Lupus Foundation of America.  And, I am sure that I can get all the help I need from them.  But, if any of my readers happens to live in the Upstate area of South Carolina (I think that encompasses Easley, Greenville and Spartenberg at the least) and has good doctors please send me an email.  I really would appreciate any help on this.  The most important thing that needs to be addressed prior to the move is to ensure that I can have my INR levels monitored.  The INR level is the amount of anticoagulation medication that is in my blood.  It needs to be monitored to make sure it remains therapeutic.  That it is not too low nor too high, both can be disastrous.  Even though my levels never really stay therapeuticfor long, I am spoiled where this is concerned.  For the past four years I have been having my levels monitored at our local hospital.  They have a anticoagulation center.  I simply get my finger pricked and within moments we know what my level is.  I do have one of those monitors and can order the testing strips.  And, I suppose that I can call in the numbers to the center here in NY until I find one there (if there is one there.)

Then there is the matter of my pain management.  I believe that a history report written by my PCP and/or Pain Management Doctor will be okay.

I plan on making an appointment to see that rheumatologist when we go down in May, just so that I can get things in place prior to the move.  I am trying to keep my stress level down because one of the main flare triggers for me is stress.

In my mind I know that everything will work out the way it is supposed to.  That before I know it, it will be this time next year and we will be settled in our new home.

Gary and I are always talking about the move.  What we want.  What we need.  Our philosophy is that we are building a home, and we will put in it what we have dreamed of.  I am an easy person to please.  We want it to be a comfortable home.  A happy place for us to start our new lives.  It's going to be big.  2,800 square feet big.  We are not going to cut corners but are going to be frugal in our choices.  For example, where our kitchen is concerned, we will use ready made cabinetry from Home Depot.  Things like that.

We will be saving a lot of money by Gary and Joseph doing most of the work.

There will be six of us living in our new home.  There are the four of us.  Plus Gary, Jr.'s girlfriend.  It appears that this relationship is serious.  Hopefully, after construction of the house we will be building a separate garage structure with an apartment above for them.  My Mom will be coming to live with us.  There are many reasons for this.  I hate that she lives alone.  For her it will be a good financial move.  But, also for more selfish reasons on my part.  I want to have my Mother with me.  I need to have my Mother with me.  We have taken many things into consideration when laying out the basic plans for the house.  Mom will, of course, have her own room.  In her room will be her own bathroom plus a separate sitting area.  She still needs her own space.  Having her own sitting area will afford her the personal space she might need.  Mom can go and watch her own TV shows.  Or read.  It will be her own personal haven.

There will be a den for the family.  I've always wanted a den area that is separate from the living room.  I want a living room that has no television in it.

Our kitchen will have a pantry.  No use building a kitchen that doesn't have enough space for all the things that go with a kitchen.  Now our kitchen is tiny.

And, of course there will be enough bedrooms for the family and a guest room.  Gary, Jr.'s room will eventually be the guest room.  As soon as the garage apartment is completed.

I want to be able to give my children the opportunity to start off their married lives being able to save for their own home.  With the garage apartment there for them, they will be able to save for a home.  We haven't decided if we will take rent from them and save it for them or leave it up to them to save.  I suspect that taking rent would be the better choice.  It will get them used to having that to pay each month.  And, let's face it most of us don't save what we should if left up to our own device.

As you know we have purchased land in Easley, South Carolina.  We are drawing up house plans and should begin building by August.  Gary and my brother, Joseph, will act as the general contractors.  Most of the building will be done by them.  The only things that will be contracted out are those that are either too massive to do with a small crew or those jobs that need expertise.  The first thing to be contracted out will be pouring the digging out the footprint of the house and pouring the foundation.

If this entry seems garbled, well that is because I feel garbled.

There is so much to do.  But, it's all good things.

Have a wonderful Sunday!



Good morning all!!

I want to bring your attention (if you already don't know) to Krissy from Sometimes I Think)

I apologize for having to put in the entire web address, there is something wrong with the mouse on my lap top and I cannot drag and drop the heart.


John's cancer has returned.  Please go over and offer words of encouragement and prayers.  Krissy and John have been traveling a long and difficult road for a long time now.  John has had so many complications and set backs and then when they think John is getting better their bombarded with the news that John's cancer has returned.  I can't imagine what Krissy is going through.  I can't even begin to understand.  They were just newlyweds when John got sick.  Krissy and John are two wonderful, Godly people.  I am praying that God has some miraculous plan for them.  So please lift them both up in prayers.  The Bible tells us that...

"Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them."  Matthew 18:19-20

Also here is a great commentary on this scripture.


Thank you,


Saturday, March 10, 2007

South Carolina

Things here are moving so quickly.

Just this week hubby and I purchased a half acre in South Carolina.  Most of you know that my Mom and my Brother (his wife and four beautiful young daughters) live there.

It was always our intention to eventually move down there to be closer to my family.  The plan was to make the move in five years when hubby retires.  But things have happened to make those plans come to fruition a lot sooner.

Most likely we will be down there within a year.  Hubby and my brother will be building our home themselves.  It's going to be a very exciting year for us.  This will be our first home.  I can't wait to start picking out stuff.

The city ordiance in Easley state that the home must be at least 1,800 square feet.  That is really quite a large amount of space.  There will be four bedrooms. Of course, the master bedroom will be a master suite.  With our own bathroom and large walk in closet.  I also want a great big kitchen.  It isn't going to be a million dollar kitchen, but it has to be big.  I'll be getting all new appliances and some new furniture too.

After the house is finished they will start working on building a two and one half car garage.  Yup, that sounds silly one half car.  But that space will be a workshop for hubby.  Above the garage will be an apartment.  It will be for which ever of my children decide to get married first.  Most likely it my son will move in there.

I will write more are things progress.

Everything else is the same here.  I am in a pretty significant flare.  I'm still not sleeping.  And, am still having horrible dizzy spells.  Big bad headaches too.

Even with all these health issues I am still very happy.  Very excited is a better way to put it.

Love you all,


Thursday, March 1, 2007


Please read Dawn's journal entry..........


My mood is always loopy when I am in pain.  And, in pain I am.  Aside from those crazy auto immune things I have going on, I also have a horrible spine.  My spine is a mess.  There is severe spinal stenosis going on.  Anklosing Spondolytis, Degenerative Disc Disease, too.  Plus, because of my blood clotting disorder APS, I have a number of blood tumors located through out the spine.  These tumors, we believe, have come because of either injury (I fall down the stairs a lot), or because of the inflammatory process, or just because I have a blood clotting disorder. They are unsure if they can be removed or not.  Sophisticated tests such as MRIs and CATs do not show the intricate make up of these tumors.  Meaning if blood vessels, etc are entwined within them.  So the only way to find out would be to go in there and take a look.  Nah, I don't think so.  I am not ready for anyone to poke around in my spine.

In 1975 my grandfather, who also had Anklosing Spondolytis, had extensive spinal surgery.  He ended up a cripple.  Now, I understand the reasons for his inability to walk.  It was 1975 surgical techniques were not as sophisticated as they are now.  He wasn't a very receptive patient and did not do the PT exercises necessary to keep his spine from fusing.  AS was a relatively new, un researched illness at that time.  But, still I am not ready to take any chances.  He had a rod put in his spine.  His surgery was 8 hours long.  Ouch.

Plus, because of the anticoagulation therapy (Jantoven, which is a generic Coumadin) there is a protocol I need to follow before any surgery.  I need to stop taking the Jantoven and go on Lovenox (which is low molecular weight heparin).  With Lovenox there is a high risk of paralysis when having spinal surgery.  So, I need to stop the Lovenox at least 24 hours (if not more) before the surgery.  Therefore, I will be unprotected during that time.  Which means I am at a high risk of throwing a clot and suffering another stroke.  Or pulmonary embolism or MI.  I've already had two strokes and I was lucky to have survived them with minimal damage. I was left with a seizure disorder and some left sided weakness.  I am not going to push my luck.

Yes, for a normal person, there is still a risk.  But it's normal risk.  I am not normal.  I am a science project.  Yes, if I have the surgery to remove the tumors my pain will diminish drastically.  I am still not ready to take the chance.

So I, monthly, visit my pain management doctor and leave with a fist full of prescriptions.  I keep this monthly appointment no matter what.  I don't think I have ever rescheduled.  I go there sick.  I go there no matter what.  And, yes my body is dependent upon the meds he prescribes.  But, no I am not addicted.  I don't buy drugs on the street.  I don't go crazy and sell my stuff to buy my meds.  I take what is prescribed and have only one or two times taken more than I was instructed.  I only did this after a phone call to my doctor.  I am on what is called a Duragesic Patch.  I take a high dosage of this.  I am also given something for breakthrough pain.  I think it's percocette or morphine.  It's generic so I am not sure.

My Lupus pain is managed wonderfully with these meds.  My back pain is another story.  Not a day goes by when I can say I have no pain. The pain caused by my back woes is so intense I cry, no sob in pain usually daily.  My sleep is disturbed because the pain wakes me up.

But, I go on.  I do the laundry.  I cook dinner.  I do stuff.  I just don't go out much.  I just don't think it's necessary for me to go out.  I don't have anything to do during the day except to go out and spend money.  So, why bother. There is nothing I need to buy.  We do our food shopping every two or three weeks.  And, if I can't do it, my daughter and her boyfriend do it for me.  They go armed with a shopping list, coupons and my Visa card.  She is actually better at it than I am.  She works in Pathmark so she knows all the prices.  She collects coupons so she always saves lots of money.  And, I think that they pretend to be a married couple doing their food shopping.  How cute is that?

When I can't cook or do laundry I don't.  My daughter does the laundry for the family.  And, because when I do cook, I cook a lot extra we always have left overs in the frige to eat or an entire meal in the freezer.  Or we order out.  I have two wonderful women who come here every two weeks (or every week, if I choose) to clean my house.

Living with pain is not a choice anyone would make.  Having or complaining about pain is not something most like to do.  I would prefer to be able to be silent about my pain.  But, I am unable to do that.  My pain makes me cry.  My pain makes me moan in my sleep.  A few times my pain has gotten so bad (a 10 or even more) that my body has gone into contractions.  My pain has caused me to have seizures.  I have vomited because the pain is so bad.

So, I gladly take the pain meds and prednisione that is prescribed for me.  And, I could care less if my body is dependent on them.

Thank you Dawn My Friend for bringing this to light.  People need to know about chronic pain.  I find it funny when people make uneducated, ignorant comments.  I know one person who makes more insensitive comments than I care to count.  This is the same person who after a colonoscopy took to her bed for two days.  The same person who after a root canal had to lay call in sick for three days.  Forget it when she gets a headache, the world ends.  I just laugh, that is all I can do.  Because trying to rationalize these things with her is useless.  I just hope that people like this never have to suffer chronic debilitating pain.  I pray that they never know what it is like.  Because I believe that they COULD NOT handle it.

Those of us who suffer from this type of pain are, indeed, strong individuals.  Our lives do not end.  We deal and try to move on.  Even when we can't we try.  Our lives have changed drastically due to our illnesses and the pain that accompanies them.  But, we are still strong.

Hugs, Lu