Lupus can be predictable part II

It would seem that in the whole vast realm that is my blog (Ha ha) “lupus can be predictable” seems to be the most read post.  I guess that’s a good thing because it means that more people are trying to get a handle on this whole lupus disease.  It’s a little perplexing to me that more people don’t know about lupus and the affects that it has on a family, on a person, on life in general.  Cancer is such a focus…and heart disease…high blood pressure… diabetes.  But lupus?? Hmm…but the reality is that all those former mentioned illnesses are often associated with lupus.  A lupus warrior ( I call them warriors because every day they go about their lives looking normal, acting normal, not letting on they are seriously hurting) can struggle everyday with cancer ( I have had squamous cell on my shoulder) heart disease, high blood pressure ( I am on three blood pressure meds and mine still averages 151/101) not to mention lung infections, arthritus, shingles, irritable bowel syndrome, blood clotting disorders, migraines, and a host of other ailments that just happen to accompany lupus. 

A lupus warrior gets used to reading their own bodies to feel when a flare is coming on.  Oftentimes we are very good at acting, we can pretend that everything is okay when it really isn’t.  But we ourselves KNOW when something isn’t right.  And, my family is getting pretty good at spotting when things are not quite right with me.  But, even then I try my hardest to throw them off the scent and pretend like things are good. 

For instance, I have been battling a migraine for about 2 days now.  But I still ran my kids around from here to there, I am going to lunch with dad today, I am trying my hardest to clean this messy house of mine, and keep moving.  Because in reality, there is only so long that someone can stay in bed, laying around, before they feel totally worthless and the depression that exists in the background of your mind everyday, moves to the forefront and destroys your day, week, month whatever.  So, I plug on.  But, tomorrow, when I have exhausted myself with trying to be a “good mom, good daughter, good wife” I will be in bed hardly able to move wishing I had taken better care of myself.  Hence, the predictable part of lupus. 

So, if you know someone with lupus or you yourself have it, know that you are not alone in your struggle, and fight.  Know that there are many many of us out here who are dealing this on a daily basis yet feeling hopelessly alone.  And don’t forget to at least some of the time take care of you!!!!!!  And, keep fighting!

Ugh!

I have been feeling gross all day today.  My stomach is churning and nothing that I eat stays inside of me for very long.  I’m not sure if I have a flu bug, or if it is just stress from the goings on of our home at this time.  I want so badly to write something positive and uplifting and life affirming here today.  I want to feel those things…faith grace mercy, joy, happiness.  But these days all I seem to feel is defeated and tired.  It would appear that life is giving me lemons right now and I am not sure how to make the lemonade!  Has anyone ever had those kinds of time in life? 

I try to really look for the good in every situation.  I stand by the fact that God’s grace is sufficient for me, but I gotta say that this is a time, in my life, which hasn’t really happened very often, that I am doubting..doubting myself, my life, my marriage, my family…I’m doubting god.  This is one of those times, like when I first was diagnosed with Lupus, when I don’t see any end in sight or at least  not very soon.  And, it’s not just the crud going on with my stepson, it is a  whole lot of strange things goin on in my life.  Maybe I am going through menopausal mid life crisis.  I’m telling you those hot flashes are way worse then my mom said, and she said they were pretty bad! 

We had a really fun weekend last weekend.  My stepson had basically run away on friday night and wasn’t heard from all weekend…so, we went to a movie and took my kids, yes MY KIDS to this great resturant over by the new cardinals arena.  We had a great time laughing and being together…like old times.  My other step son was with us and he gets a long with my kids great!  There was no stress going on about the other step son, no mention of him, no chatter about him nothing.  And…NO TEXTS or PHONE CALLS from my husbands’ ex about him (which are dozens on a typical day).  We were just us again, back to normal.  Then Sunday came and once again all hell broke loose!  The step son was brought by his mom back to our house, after having been on the run all weekend, and was given no consequences for that, no punishment it was back to life as normal…with him calling all the shots.  But for that one moment in time it was good.  I have tried and tried to tell my husband “do you see what he is doing to all of us”  but…to no avail.  anyway, I thought I would post some photos of the fun we had for that split second in time!

Huge cotton candy desert!

 

911, upcoming surgery, weekend fun

First and foremost I want to remember, today, all the men and women who lost their lives in 2001’s tragedy!  And, to all the firefighters, doctors, nurses, public servents who went above and beyond the call of duty on that day I salute you all.  I can’t even imagine what it was like to be there on that day.  But, like all americans, I remember exactly where I was and what I was doing.  When the news came across that a building had been hit by a plane i was in my room, with my daughter and we began watching the news.  It was a work/school day so we were rushing around trying to get ready while trying to stay tuned at the same time.  At first it was thought it was a random accident and then the second plane hit.  I remember us both stopping…standing in front of the TV as the president spoke to the nation about the horrific sight that was unfolding in front of all our eyes! 

My first thought was to hug my kids, to tell them i love them and to hold on to them.  Then the fear set in.  Where will they strike next?  Are any of us safe anymore?  That evening they held a service at our church, a prayer service, dedicated to all who had lost their lives and praying for us as a nation.  I remember sitting there with my mom holding my hand as I cried thinking about my little boy, how scared he seemed as he talked about what had happened that day.  I remember wanting to grab him, and hold on to him and never let him go.  He was 7 years old then!  And the days following were like a blurr.  The sights and sounds of that day were played over and over for us to see…so we would never forget!  Sometimes I think those sights and sounds need to be played more often.  We have become a complacent nation.  We argue and fight over so many things…some important but some, in the grand scheme of things, hardly worth fighting over.  We need reminders of how our nation pulled together on that day, how we helped our neighbors without questioning each other’s political beliefs…we just jumped in.  I remember all the flags hung from houses and cars, the bumper stickers.  I remember think “Man I hope this keeps up…that people keep this spirit” knowing in my gut that we would all go back to life as normal, time fades all things.  And, the flags have disappeared, the american spirit that was so prevelant during that time has faded.  We need to get that back!  We need to always and forever live the phrase “God bless America”. 

Next monday I will be having some surgery to remove a lump from arm.  It is thought to be cancerous.  I have been in this very spot so many times before.  Sometimes they were benign and sometimes they were malignant.  Cancer is always scary no matter where it is on your body and no matter how much a doctor tries to tell you it will be okay.  Cancer is a big scary word.  I have had three breast biopsies.  So far, all benign.  But I did have squamous cell removed from my shoulder a couple of years ago.  So, needless to say, a reoccurance is scary.  But, I have faith and I believe and always will that God has brought me down this path for a reason.  There is something I need to learn, some mark I need to leave on some small portion of this world.  Maybe it’s just so that I can show my kids that although life can be scary you can get through just about anything with God, family and love by your side!  Maybe it’s to reinforce the importance of family in my life and what it really means to fight for that!  I’m not so sure yet.  (I have secretly hoped it is so that I write this wonderful best selling book and end up in Oprah’s reading club LOL).  Anyway, I know there is a reason for all of it.  So, like everything else, I will get through monday with my daughter by my side (she has come from Tucson to be with me that day!  I love her for that).  It will work together for good!

This weekend, my husband and I are going to the movies with my step daughter and her husband and my step son.  This is to celebrate my hubbys birthday that was on Tuesday.  Here’s the big part of that.  My step daughters husband is not one to ever go to movies, nor does he particularily enjoy hangin out with family.  He is a solitary guy, who enjoys hunting, camping, quading, sort of solitary kinds of things.  In the almost 10 years I have known him we have NEVER been to a movie with him.  I go all the time with my step daughter because her husband doesn’t take her to movies.  So, this is a big deal!  And, my  husband is pretty excited about it.  Then after the movie they are going to pick up our grandson and come over to the house for a barbeque and some swimming…yes it is still swimming weather here…101 degrees and higher!  YUCK!  So, it should prove to be a great day! 

I hope as you go through the rest of your day and this weekend, you will take a moment to remember those who lost their lives 8 years ago, thank God for your families and friends, and hold each other close for a few moments.  I don’t think any of us say “I love you” enough…and there can never be too much of that!

Have a great weekend….

Farmington NM, my hubby’s b-day, and life

Today is my husband’s Birthday!  In celebration of this great day we went, this past holiday weekend, to visit his family in Farmington New Mexico.  He hadn’t seen a lot of his cousins in  many years, and hadn’t been back to Farmington in I don’t know how long.  We had an amazing time!  His cousin John and his wife, who happens to have the amazing name of Lori!, opened their house to us and were amazingly wonderful!  They took us to Silverton Co for the day…beautiful place!  And the weather…it was a lupus fighter’s dream come true!  It was perfect the entire weekend.  We had such fun, had time to reconnect with each other after this totally stressful and crazy time in our life, talked, laughed and just had fun for a few days without worrying about anyone but us!  Sounds selfish kind of, but at the same time things have been so hard, so tense and out of control with his son, and with life that we needed this time to be together!  I’m not saying that we solved all the problems that are going on right now.  That is a work in progress that has no easy answers…well there is one easy answer…send his son to a detention center….but even that isn’t an easy answer.  I miss my kids, I miss how life was before my step son got so messed up, and I miss the more calm atmosphere that our house used to have.  How to get any of that back after all the hurt and emotional turmoil that has gone on is yet to be seen.

I found this song on the Sugarland CD thats lyrics really hit me.  When I heard it for the first time it was as if Jesus were standing there in  front of me speaking them directly to me.  I thought I would share them with you in hopes that maybe they will speak to you on some level as well!

WHEN THE WEIGHT OF THE WORLD BEARS DOWN SO STRONG, YOU LEAVE FOOT PRINTS IN THE STREET

AND THERE’S TOO MANY MILES TO FACE WITHOUT A FEW MORE HOURS SLEEP.

THE STORM CLOUDS OVERHEAD WON’T SHED ANY RAIN TO QUENCH YOUR THIRST

I WANNA BE THE ONE YOU REACH FOR FIRST!

WHEN YOU’RE FAITH IS STRETCHED SO THIN THAT YOU CAN SEE STRAIGHT THROUGH YOUR SOUL

AND YOU CAN’T FIND A NICKLE TO BUY A SMILE CAUSE YOUR POCKETS ALL GOT HOLES

BEFORE THE DAY CAN GET MUCH WORSE, I WANNA BE THE ONE YOU REACH FOR FIRST!

FALL INTO ME, MY ARMS ARE OPEN  WIDE! AND YOU DON’T HAVE TO SAY A WORD CAUSE I ALREADY SEE

THAT IT’S HARD AND YOU’RE SCARED AND YOU’RE TIRED AND IT HURTS

AND I WANNA BE THE ONE YOU REACH FOR FIRST!

I need to remember to make Jesus the one I reach for first.  When I feel like I can’t take anymore, like I am going to fall apart, when my heart is breaking beyond repair, He needs to be the one I reach for first!

front of sanctuary

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