I Know This Puzzle

I know this body.  It has been mine for soon-to-be 19 years now.  This body has not functioned properly for almost my whole life.  I understand that it hides the problems happening, but that does not mean that something wrong is not going on.  That does not mean that I do not know what's happening.  I am not crazy and I am not a hypochondriac.
       When I say my body likes to hide what's going on, I am not kidding.  Let me tell you a story that explains what I mean to a tee.
       I have had two back surgeries.  A spinal fusion, and a revision to that spinal fusion.  A spinal fusion is a procedure where the surgeon uses titanium rods, screws, and bone grafts to correct severe scoliosis.  A revision surgery is when they have to go back in to correct a previous surgery.  My spine is fused from T-3 all the way down to my pelvis.  While fusing my spine they discovered a broken vertebrae that had not shown up on any preoperative X-rays; it was hiding.  After my recovery I started experiencing a sharp, stabbing pain in my hip every time I took a step.  I was also experiencing a dull pain whenever pressure was placed on my back, like washing my back while showering.  We did multiple X-rays which didn't show anything.  The pain was not fading or going away, so we did a CT scan which didn't show anything either.  Finally, my surgeon decided to perform a revision surgery.  He didn't know what the cause of the pain was or what he was looking for; he went in blind.  What he found shocked him.  The screw in my hip was completely stripped from its place, I had two large abscesses, and another broken vertebrae.  My body was hiding it all from the X-rays and CT scans, but I knew something was wrong.  I knew it was more than just pain, and, my surgeon listened to me.
       I've been called crazy too.  I went to a pulmonalogist for trouble breathing and she told me to go see a psychiatrist.  Turns out I have 37% lung function and restrictive lung disease.  I know my body!
       My body hides its problems, but I am not crazy or a hypochondriac.  I know my body better than most.  Believe me when I tell you something is wrong!  Believe me when I tell you that it's more than what you think!  My body is a puzzle, but I know this puzzle as it physically makes up me.

(Images used from google are not owned by me)

Find Your Inner Strength!

A week or so ago I sent my friend a picture of neurons on my nails.  This friend of mine, one of my best friends has epilepsy.  Her seizures are not well controlled and, at this time, she is helping me go through seizures of my own.  I put brain neurons on my fingernails to help me deal with anxiously awaiting the results of an ambulatory EEG.  Every symptom I am having, though, points to seizures.  My best friend's symptoms and mine match perfectly; we understand each other in an amazing way.
       After complementing me on my nails, she told me that my nails are an excellent example of why people call me strong.  She said, "Instead of always thinking of how seizures stop you from doing everything you want to do (not that it should)- you celebrate who you are, physical querks and all."  Saying that not everyone has that kind of inner strength and by having neurons painted on my nails, I am embracing who I am.  It seemed so trivial to me.  I mean, it's only nail art, right?  Wrong!
       I am exhausted, and scared, but apparently I do well at not showIng it.  I am told I live with a reason to smile, and I'm glad because I try my very best to do just that!  Everyday my service dog, Cleo, makes me smile, my cat showing his little attitude off makes me smile, my nail art makes me smile, and my best friend, Nicole, makes me smile!  Nicole said, "You still live with purpose. And that shows AMAZING inner strength.  You have drive to be a part of society.
There's a difference between acting on our fears and exhaustion.  Though you feel those things, you get out of bed and face the day."
       The lesson here is... figure out how to deal with the toughest of things.  Find something to smile about each day.  Something as simple as your animals or as big as achieving the greatest goal.  It is okay to not feel good, it is okay to be dained of energy, it is okay to be having a hard time, just try... and smile!  Find your inner strength!

What I Hear

Yes, there are good days and bad days.  Yes, some days I have more spoons than others.  To be brutally honest, though, everyday I feel like shit; it's just some days I feel like more shit.
       "Fake it till you make it."  That quote means a lot more to people who have chronic illnesses.  We feel like shit all the time, so faking is an art.  Trying our hardest to act like everyday is a good day.  Sometimes it's just not posible to fake; the day is too much of a bad day.  Our bodies feel too much like the life has been drained out of us.  So, please, don't mind me if I can't "fake it".
       "You look so good", is also a saying I hear too much.  The life tends to be drained out of me, I am always in pain, and more times than not, I can't breathe.  It is said with kindness, sincerity, and good intentions; I know.  I may look good on the outside, but it's usually not how I feel.
       "You aren't even trying", is something I heard from a friend in a class.  I started failing my class and kept asking my friends to help me pull through.  She said to me, "We are busy people and aren't able to drop everything to come tutor you. I'm not willing to help if you aren't even trying to complete the work. I get your sick, but it doesn't look like you want to pass."  I wanted to pass!  I am always doing my best and a lot of the time I am trying harder than my best.  I am sick so, the energy to physically complete the work or even have the energy to think, isn't always there.  I always want to do my best!  I always try harder than my hardest, and she did NOT understand!  Let's just say, I passed The Spoon Theory on for her to read and no longer consider her a friend.
       The comments I hear as someone with a chronic illness are hard pills to swallow.  I am not understood until you get to know me.  My story is a long one but in time, as trust is earned, you will hear it.  Ignorant sayings are a piece of the story.