Don’t get me wrong. There are days when I want to push them all away and tell them to leave me alone. I often stuff my true feelings because sometimes they miss the boat on what I really need from them. But the reality is, to have people who love me and care enough to look out for me is a blessing. Some people don’t have that at all.

I heard someone say once that they described lupus to someone by saying that that persons worst day with the flu was her best day with lupus. I thought that was a pretty good explanation. I describe it as a cancer that never, ever goes away. It just keeps eating at you little bylittle, day by day. And some days you just pray for it to end. It is relentless, like a termite eating away at a house, moving from one room to the next. You can bring in exterminAtors to try to kill them, but lupus is like the desert. The termites never go away. They keep coming back to chew up some more.

So, this newyear I am going to writeabout my ups and downs, my good bad and ugly. And I hope you’ll join me for theride. And I hope you willshare with me and we can support each other, share with each other. And we can fight the beast of chronic illness together. Happy new year everyone.

I’ve been trying to get out to do things, here and there, to keep my energy level building.  I’m not really depressed…in fact I wish I was more into the christmas spirit.  I miss that feeling.  I remember the feeling in the pit of my stomach when it was getting to be that time when i could drag out all the decorations, and I would begin that yearly chore of transforming my home into what, my kids and I thought, was a Christmas wonder land.  We never had the fanciest house on the block.  In fact our tree is mostly ornaments made by my kids, things that they can take down and look at and re hang over and over again.  And now, my grandkids can carry on that tradition.  There’s the moving winnie the pooh who joyfully stands under the tree moving his candle lit honey pot back and forth, the glittering snowmen and all the santas scattered all around.  And of course the multiple Nativity scenes that are found on just about every table and shelf.  We even have a chunky wooden one made especially for the kids to use to re inact that christmas story.  But this year all those treasures are still tucked away in their boxes because I just didn’t have the energy to put it all up.  All that’s up are two small lighted trees to at least make it seem a little christmasy here. 

Which brings me to my point.  It’s really not about all that “stuff” is it!  It’s really about that baby.  That baby that came into this world to change every thing!  And no matter how un myself I feel, how abnormal, He is still here with me to give me comfort, to wrap his arms around me and whisper in my ear “Lori, I don’t care about the decorations, I care about you, I care about being here, quiet, with you.  Rest in me!” 

So, this Christmas, if you have a moment or moments like I am having, which all of us with Lupus have at one time or another espescially over the holidays, take some time to remember that it is about the baby that came to comfort us, to hold on to us, to give us peace in those less then peaceful times!  Cuz that baby came to change everything!

Merry Christmas!

Oh my what a trip we had.  There was snorkeling, Pearl harbor, diamond head (which I made it more then half way up!), shopping, body surfing, luaus, stalking pirate ships, and plenty of exploring.  The weather was perfect.  And for someone who is basically, for all intense and purposes, allergic to the sun, the constant cloudyness, and light breezes made it a sheer delight to be outside enjoying God’s amazing wonders and miraculous beauty.  We laughed a lot, ate a lot, spent a lot of time together just talking and really getting to know each other in different and deeper ways.  And then there was….

THE PIRATES OF THE CARIBEAN SHIP!!!!!!

The fourth movie in the Saga is filming on Oahu, which we did not know.  But, we managed to get a peek at the pirate ship while at the Luau.  So, we decided that it certainly couldn’t be that hard to find  a pirate ship hiding on that little Island.  So we went on a hunting expedition.  And, guess what….we found the ship.  And we managed to get some great photos of it.  According to the bouncer who actually kicked us off the set sending us to the end of the pier to watch the ship sail off for a day of filming, Capt Barbosa was aboard as well as the enchanting Johnny Depp!  It was thrilling and exciting and well, about as close to real celebrity as I will ever get in my lifetime I’m sure.

But there were also some very moving moments a long the way.  One moment for me was a very simple one.  We went to a movie on the base, which is where we stayed while on vacation.  The movie theater was quite old..maybe from the 40′s or before.  But, before the movie began a film clip came up showing footage of different wars that we have fought in, different presidents addressing our troops, and during the clip the star spangled banner played.  And standing all around me were military men and women with their families, standing at attention, paying honor and respect to our flag, in this old building that had seen hundreds of other men and women just like them pass through, some who had never come home after fighting for our country.  It was so moving. 

Standing in the command room of the Battleship Missouri with a Navy Capt who kindly turned all the lights off, and then engaged all the ship lights, the control lights, radar screens, to give us a sense of what it was like the day pearl harbor was hit.  Feeling the awe and wonder of what it must have been like to be a soldier in that little room, trying to figure out how to save this ship, and the others around them.  Truly a goose bumpy moment. 

I did have a few lupus issues, but I managed to keep them well hidden from my family, and just  moved a long from day to day, enjoying each moment with them.  It was really a trip unlike any other.  I’m grateful that we had the opportunity to go together!

We have found great humor in me being a toothless woman however.  There are many words that take on whole new meanings when said without teeth…and some things become quite creepy as a matter of fact.  I have learned how to make my self look a bit like a vampire, like a walrus and have a bitter beer face.  It doesn’t lend itself to very romantic moods however..which is somewhat unfortunate and makes me wonder when exactly my husband will go looking for another woman….at least until I get some teeth!  There are times with this disease when one can lose all self esteem and feel very small.  It gets depressing and I often feel lonely and like no one really knows what life is like for me, and it is difficult to explain it to them.  I remember asking my husband one night, not long after I had my teeth pulled “how can you even look at me, and want to kiss me?  I’m just a toothless woman.”  And he looked at me with this amazing look of love and he said “Lori, your toothlessness is the absolute last thing I see when I am with you!  I see a brave woman, and I love you!”  Those words meant the world to me that night. 

One of the things that we have done this summer is finally put my parents in their final resting place.  It is the new church home being built for community of Grace Church which is the church that was started by my brother.  My parents were alive when the church began and it is exactly where they would want to be.  So, now that the building is to a point that they could be laid to rest there we had a little memorial service for them and they are finally home!  I thought I would share a couple videos of the little service with you all.  I love and Miss you Mom and Dad!