There is really nothing brave about me!

I have been told, as of late, by several different people that I am brave for posting pictures of myself with all the sores all over my body during this last flare.  I have posted them on my blog, on my face book.  They aren’t pretty but they are reality.  Lupus is a real illness, it is deadly, it is scary and it is very unknown.  People need to become aware of what it is, how it affects people, how it can change someones life, family and reality.  And it has changed mine. 

I don’t feel sexy or beautiful for my husband very often.  I don’t feel pretty, or attractive.  I tell myself that my “inner beauty” is enough to carry me through.  But we all know that when push comes to shove every man wants a woman who is attractive even if it is for one night here or there to make him feel “like a man”.  That’s how men are and that’s the reality of life.  And I fear that every day of my life.  I live that every day of my life.  Look at the pictures…it’s reality.  But that’s not my only fear. 

When I go to the grocery store with sores on my face like that (which I don’t do often but sometimes it is a necessity) people stare.  I get the “Oh look she is a meth user” looks, the “oh she must have an STD” looks.  The other day I even saw a mom swat her little kid for staring at me.  It’s humiliating and a little sad.  But again, it is reality.

I walk into our shop, which i don’t do often because I really have been too sick to go anywhere, and my husbands customers come in and I know he doesn’t know what to say or how to introduce me….”this is my wife she is ummm….well she has umm…she is sick…she is…well….” Awkward!  I get pity looks from my family.  I have to pretend to my kids that all is well, when inside I am wondering how bad the scars will be this time.  I know that it is often even hard for people to eat when I am around…not appetizing at all.

I’m not brave.  I’m just real.  I’m living in a world surrounded by hurting people.  People looking for love and acceptance and grace.  And I am just another one of those people.  Everyday i pray for strength to make it through…one more minute, one more hour, one more day!  Night time is my escape.  But even then I dream of being sick, I dream of being alone, having to deal on my own with this disease with no one to love me or help me, of my husband moving on to personality along with beauty instead of just settling for personality.  My kids growing up and moving on with their own lives…lonliness and not knowing what lies ahead.  It’s not bravery.  It’s standing up to be counted with all those other women with this illness who need to be counted!  We are not alone!  Every day, every minute, every second of grace is one second closer toa cure!

The second post in my “series to God”

During my “sick week” last week, I sort of lost track of time.  There were moments I would fall asleep and wake up not knowing if it was the next day, the next hour or next minute.  More often then not instead of feeling refreshed from sleeping I felt worse.  You know how it is when you’re sick…you get that film on your mouth, your hair feels greasy, your skin hurts…your eyelashes hurt!  I hurt all over anyway because of the sores flopping out all over the place.  I remember one time specifically when the kids had left for school and I must have fallen asleep but when i woke up I was so startled that I really wondered what had happened to everyone and where everyone had gone.  It took me a bit to get my barrings and remember that I was just a sicko, laying like a frump in a bed feeling horrible.

I tried to shower every day in hopes that it would make me feel better…or give me the “appearance” of feeling better.  During my showers I often spent that time talking to god.  I ask God a lot of questions…most of which to this point have gone unanswered.  I asked important stuff like “why, if I have to live with lupus, couldn’t you have at least given me the looks of Jennifer anniston or Kate Winslet?” (come on that’s an important question!)  I have asked “what will happen to my family if one of these days I don’t get over one of these flares?”  “How is my husband going to cope when i can’t help him at all anymore?  And how am I going to help with the guilt associated with that problem?” 

I always stand there, in the shower, waiting to hear that voice, in the water or bouncing off the wall, or whispering in my ear, giving me the answers to all my questions.  But I still haven’t gotten any answers.  And each day that I have been sick it has gotten harder.  And everyday the urge to just chuck it all and run away has grown stronger.  It’s been almost a week and a half since I got sick and, yes I feel better, quite a bit better, but I am definatly not 100% yet.  I get tired so easily.  My energy level is very low.  I have been trying, this week, to be more up beat, using that old thought that being positive, dressing positive, and smiling, having a spring in my step may actually help me accomplish that.  And in some ways that’s true.  But in some ways its a false facade that just makes my family think that I am doing better than I am…my kids expect me to be back to normal…I’m not sorry!  My husband is hoping, fingers crossed that I am back to normal…I’m not. 

then yesterday my son comes home from school with a 103 degree fever!  Just what I need.  My mom instinct kicked in.  I took his temp, tucked him into bed, gave him some medicine.  Later last evening he came out and sat on the couch next to me and laid his head on my shoulder. Both my husband and my daughter were like “what are you doing?  Are you trying to kill yourself?  You are just getting over something.  He shouldn’t be sitting by you.”  And I am thinking…”he is my son.  I would die for him.  I would be doing this same thing for either one of you.  And I would hope you would do the same for me…but maybe you wouldn’t…hmmm.”  So, now I have a sick kid, a messy house to clean ( no, no one keeps up when mom is sick, even if you do have lupus, which probably holds true for cancer or any other disease of the kind), I have kids texting me by noon to find out what we will be having for dinner…..COME ON PEOPLE! 

It amazes me how fast they go from “you cannot go back to work for at least 2 weeks ” to “what’s for dinner tonight mom?  Oh and can you call the ortho? and I need this and I need that and can you take me here to get this?”  So, I asked god “Are children and husbands a cruel joke that you play on women to make us look crazy?”  No answer to that question either!  Go figure!

I truly believe the only way I will get some real peace and quiet, some recuperation and solitude would be to go away for a few days by myself…alone!  The problem with that is in the coming home.  I have a feeling the work to clean up when I get home would undo any relaxing I did while I was away….am I right ladies???

But, for right now, it is quiet here.  I am going to take advantage of it and lay my head down for a bit.  Maybe if I listen closely enough I will get one or two answers to the many questions that keep swirling around in my head!

God must think I’m crazy!

The official “dear God, I’m sick and it isn’t fair” series

While I have been laid up here in my house for the last week and a half I have had soo much time to sit and think, ponder, wonder, pray and meditate on my life, where it has been, what I have done, and where I want to go…beter yet where  does God want me to go.  Because frankly at this point i don’t see me going much of anywhere or doing much of anything.  And it is down right frustrating to me.  So many dreams, hopes, wishes, desires rattle around in my brain.  they aren’t even big things like sailing away to spain on a schooner with a chef and maids and slowly enjoying the ocean and all it’s amazing wonders.  And, honestly, with Lupus it would be sort of a moot dream anyway!  My dreams are much more simple. A cottage somewhere remote, yet close enough to civilization for me to have a walmart, target, mall, and maybe some small quaint cafes (my husband and I have found the most amazing food at the most obscure of places).  Oh, and a movie theater would be a must.  But secluded enough that if we wanted to sit on the porch and watch the sunset uninterrupted, and just enjoy each other and the beauty God has given us we can.  Not a totally unattainable goal for a person with Lupus i don’t think. 

I have always wanted to write a book.  I have written one…but it really didn’t go anywhere…but I do have my name on at least one book in this world somewhere.  that dream may be somewhat out of my reach..who knows.

I want to watch my kids be successful, have families, enjoy grandkids….and be able to send them home when I have had my fill…LOL. 

I want to love the Lord with all my heart, soul and mind.  I want to truly believe in my heart that his grace has set me free.  some days…..especially the last week or so it has been hard to believe that. 

The meds I have been on during this bout of flare have not been pleasant.  They have done strange things to me physically but mentally they have freaked me out a bit.  I have had some pretty bad anxiety attacks and I ran out of anxiety medicine midway through this battle…not good….and just today got it refilled….YIPPEEEEE!!!!!  So, when I feel those heart palpitations, and my hands start to get all clammy, my mouth gets dry and i want to run away to God only knows where, from the fear that is building in my gut, my mom and my brother who also have suffered with panic attacks have taught me to use that time to pray and one of two things usually happen.  Either I find myself calming down or I end up falling into an amazingly deep and peaceful sleep.  it’s amazing what God can do isn’t it…it would just be nice if we stupid humans would allow him to do his work once in a while!

The first in this series is my discussion with god about just “getting the hec out of dodge”.  I believe it was maybe day two of my life in bed last week.  I was laying there, pretty much feeling sorry for myself, and I said “hey god” (obviously I said that to him cuz he would have no reason to say Hey God to me….I’m nowhere even close to that status yet…although some may argue the point LOL)  I said Hey God what would be so bad about me just packing everything up, finding a little place further up the road in, oh say New River…Prescott….yarnell even…I would even settle for wickenburg, to just hang out.  it wouldn’t have to be elaborate.  Nothing special.  Just somewhere for Steve and I, Jake and Spencer….uh oh…Jake and Spencer….the snag in my theory.  They would never go for leaving their friends and moving to some podunk little town….not even for me.  Not even if i begged.  Then there’s the matter of the business we happen to be in hock up to our ears in.  What do we do with that?  Ummmm, how about just walk away?  People do it all the time.  In Life time movies people leave, pack up and move away to create these great lives in order to save their families and sanity and life. 

Seriously, God there has to be more to life then me dying.  And that’s what I am doing.  I am dying a little more everyday.  And, if I am not around to help my husband, he will die.  He’s not a young man anymore.  He hasn’t out right admitted it but he is having health issues of his own and that is one more worry that adds to my stress.  I have my kids on the one hand demanding me to stop…to quit do all this stuff….they don’t want me to die, to overdo it.  My husband is supportive on the one hand but yet I can see the disappointment and the look of panic in his eyes when I leave him to do it all on his own.  So, why not hand it all back over to who we bought it from?  I think we got took anyway.  Isn’t it acceptable to just RUN!!!!!!!!!!  I want the cottage, the front porch swing, the walks down the path without the sun killing me, I want the time with my husband BEFORE 3 AM which has become his normal time coming home from work.  i want our weekends back.  I want those moments we shared when we were dating when we were first married, before the economic crunch hit  us and he lost his job. I want the romance back, the spark, I don’t want to feel sad so much of the time.  I don’t want to wonder if it is all worth it and if this is all there is.   I DON’T WANT TO HAVE LUPUS!

Stay tuned for episode #2!

I was sick sick sick!!!!

I hate being sick!  I know I am permanently sick…but being sick like infused with infectious disease oozing out your pores kind of sick…well that’s just gross and ishy!  And I don’t like it.  I have been flat in bed for a week.  Today is really my first trek out into the real world.  And yes, it was to the office, to open mail, and catch up with out phones ringing off the hook and people bothering me.  It is silent here, peaceful and uninterrupted…and a change of scenry!  Now, however, I am getting a bit sleepy and am ready to go back home to the warmth of my comfy bed, my mickey mouse blanket from disney land (Which, by the way the dog has somehow decided is her blanket NOT mine), and watch a little TV…like I haven’t done enough of that over the last week.

So, what ended up being wrong with me you ask??? You did ask right??? Well, if you didnt..too bad, I’m gonna tell you anyway!  I have a profound case of shingles…and a staff infection and a fungus (ewww).  So, I am on this medicine that is upsetting my stomach tremendously, and causing me grief!  I have sores all over me that make me look like I have been mauled by a tiger, and I am just nasty ugly.  I even asked my husband if he wanted to have sex and he said “you’re kidding me right??”  Just kidding…I didn’t really ask him that…I dont want anyone touching me it hurts too much to be touched but at the same time I really feel like I want someone to hold on to me.  But then when anyone comes near me, my husband, kids whoever, I tell them “not to hard, not to tight…it hurts…back away”.  I even scream when I get in the shower cuz the spray of water hurts like a bizillion pins hitting my skin.  Does it sound fun yet?  It’s a disney ride let me tell ya! 

And just when I think it is getting remotely better I get a twinge in my lower back, or upper shoulders, this ache, this pain that becomes relentless and doesn’t go away.  I’m trying to stay away from the pain meds they gave me cuz they just keep me sleepy all the time, but at the same time they do take the pain away. 

Hopefully this won’t be a long drawn out process.  I would love to be back among the living sooner rather then later.  It is stressful being functional, it is even more stressful being totally un functional!

Oh well carpe diem!  Or is is Crappy Dayum??? who knows!