Wednesday, May 19, 2010


I can’t tell you how many times I have answered someone with …“NO MY RASH IS NOT CONTAGIOUS…BUT I WISH IT WAS!!!”  I think I am getting a T-shirt with that printed on it and maybe even one that says…“WHAT DO YOU MEAN IS THAT CONTAGIOUS?  ARE YOU SAYING THERE’S SOMETHING WRONG WITH MY FACE?”

IDIOTS…most people are idiots and don’t realize what they say or do until after it is too late.  They don’t realize that people like me or someone who is dealing with a chronic illness…that we don’t have any control over things except what we try to limit in our lives.  People don't stop to think how harsh their words are or how they might be insensitive to someone with a chronic, debilitating, lifelong illness.  I fondly refer to it as “mouth & brain diarrhea” or MBD.  They open their mouths and shit flows out without their brain being engaged to stop them.

With that said…the 99% of these so-called “idiots” don’t really want or intend to hurt us…to be mean or insensitive.  They are really trying to reach out to us so that they can understand, be compassionate, but since they are ignorant of what we go through…they are clueless to know their word choice is hurtful or even demeaning to us.  Maybe the worst thing they ever experienced was a hang nail or a zit on their ass.  They do not have the same point of reference as I or anyone else who is suffering from a chronic illness.

So, here is a head’s up on what my morning’s are like…

…I wake up and I still feel exhausted.  My muscles ache.  My joints are stiff and painful…sometimes they are swollen.  My skin feels like it’s on fire.  I stretch to test the waters to see if the day is possible.  And I think to myself “Hmmm…stretched ok…time to go potty.  Let’s see how difficult it is to maneuver out of bed…woot! The EAGLE HAS LANDED!!!”  My feet made contact with the floor and I didn’t fall down.  I use the bathroom and decide to get dressed.  Bra fastened!  WOOT!  No buttons on top or on slacks.  Slide on shoes.  BOOYAH!  All dressed.  Today looks promising…

We already feel bad from what we are living with day to day.  We already feel horrible from being sick, from living with the subtle and sometimes not so subtle changes that happen day to day, even minute to minute. For me…it’s the feeling of my energy melting out of my body into the floor and then hearing someone say..."but you look normal and so healthy" to "are you sure you're sick?"'s enough to make you want to scream and give up.  I would never wish my disease on someone else.  It would be easy to fall into the whole “WHY ME?” mentality.  I don’t.  I chose to remember that God never promised me an easy or simple life.  The question anyone who is sick needs to ask themselves and remind others is “WHY NOT ME?”  I am not better than anyone else.  I am not more important nor am I more deserving to be healthy.

That’s where this blog comes into play.  I am trying to educate the “normal, healthy people” who don’t walk in my shoes every day. So they can understand…

For me…the part that hurts the most is when people who are your family and friends who see you every day, talk to you every day…the people you know are supposed to know better...they are supposed to understand.  AND, when they don't....when they say things like…

"Stop acting crazy"
"Stop being sick"
"Stop letting yourself feel bad"
"Stop being weak"
“Suck it up”
"Stop saying you can't do something because you're too tired"
"Stop saying you can't because you hurt"

GUESS WHAT…NO ONE with a chronic illness wants to be sick.  We don’t wake up saying… “OH THANK GOD…I can be sick today!”

I didn't wake up today or yesterday or even all those days ago over the last 15 years of my life deciding that "OOOH...Today, I am going to be sick.  I am going to have horrible rashes, and have my kidneys be damaged.  I am going to have the lining around my heart get inflamed.  NO...Today…TODAY… I want to have my brain to be affected so that I can suffer from psychosis, seizures and even a mini stroke."  

That's right...I wanted to have this stuff happen to me.  I wanted to behave erratically, cry and feel all this pain.  I wanted to lose people around me who I love and depend on.  I want to be alone. I want to suffer alone.  I want to die alone.  I am not sure why some people think I chose this for my life…that I wanted to be sick.  I want to scream at those people and say… “I am so happy you all figured this out so I don’t have to pretend anymore.  THANK YOU.  My ruse has been discovered.  You found me out.”  AND then V-8 slap them in the forehead and say “quit being stupid”.

So…No my rash is not contagious….BUT I WISH IT WAS!  Then maybe you can live a day in my shoes and see what it was like to parcel out my physical energy…my mental energy…to decide if doing that task is worth what I will lose energy wise.  Maybe you can feel the pain I experience the moment I wake up until I go to sleep at night.  Maybe you can wear the mask I wear so no one has to see you hurting or being tired.  Maybe you can pray and trust that those who love you will still let you be yourself when you get home from work so that you can melt into the couch or bed and cry because you were superwoman at work and it was all the energy you had for the entire week…but too many people depend on you to do your job.  Too many people depend on you to do everything.  To be everything to give and give and give and give…sometimes if we actually tell you NO…it may mean that we have nothing left to give out and that last little bit you are asking for will the proverbial straw that sends us to the hospital. 

Today my answer is NO to everything.  Today…MY RASH IS CONTAGIOUS…Hope you enjoy walking in my shoes…Today…I want to be NORMAL.  I want to be FREE from pain…to not be scared….to not be sick. 

BUT YOU LOOK SO HEALTHY…“No…but I wish I was.”

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