Invisible Illness

If you have never heard of "Invisible Illnesses"...Join the club! I had no idea there was such a name...until recently and I have one!!! Who knew?

 The best way to explain this is that I have an illness but you can't see it. I'm not covered in bumps, there's no rash, my skin isn't falling off in sheets (this week!! LOL) and I, so far, still have all my hair. For the most part, I "look" healthy...but inside its a different story. My kidneys hate me! My potassium is all over the place, the calcium leaks out of my bones, my phosphorus is too high and did i mention my kidneys hate me?!?!?

 With that said, here's what I have learned...

 There's two ways to look at invisible illness...
1. Most of the time I look healthy, so no one notices when I am out and about.
2. Most of the time I look healthy, so no on notices when I am out and about, then I mention I'm on dialysis and someone always says "But you look so healthy" and depending on what kind of day i'm having that comment can either make me smile or make me want to punch them in the face. If i feel like poo and you tell me i look healthy, chances are i'm doing everything i can NOT to punch you! Not because of what you said but because inside i feel like poo and would love to feel "Healthy".

For those of you that do not know, I had Kidney Reflux when i was 8 years old.  Basically, the tubes connected to my kidneys and bladder were too long.  They were shortened, but too much damage was done to my kidneys and my parents were told i would need a transplant at some point.  Flash forward 19 years, I received a transplant from my cousin in September 2008.  All was fine until 2011 when i got a Kidney Infection.  The good news?  I couldn't feel the pain of the Kidney Infection.  The Bad News?  I couldn't feel the pain of the kidney infection....so i didn't know i had it until it had already done too much damage to the transplanted kidney.  After way too much time in the hospital and way too many drugs they "salvaged" as much kidney function as they could.  But i was told that a new transplant would be in my future.

Flash forward again.  The reason I'm on dialysis.

Dialysis is not a cure.  It is a treatment.  So is transplant, as i just explained, transplants are not forever.

Every Illness comes with hardships.  Most mornings I wake up with a headache.  The headaches are part of dialysis and they have gotten better as treatments progress. In the beginning they were VIOLENT!  Some days I just want to sleep and some days I have more energy then a "normal" person...or at least it feels that way!  When night time rolls around I get anxiety.  INSOMNIA! Some nights are awesome, I fall right asleep and wake up in the morning.  Some nights, I am still awake at 3am and want to scream!!! The insomnia is very new to me and don't like it one bit.

Adjustments???  HA HA HA!!!  Eating dinner in bed, spending most nights hooked up to a machine, my hubby putting needles in my arm, having 2 holes in my arm, making sure i have an emergency kit with me at all times incase my arm starts spurting blood...the list goes on and on...BUT...its my life and I embrace it EVERY SINGLE DAY!

The hardest part of an invisible illness is that I may look ok but on the inside i am fighting a battle and have zero control over it.  I may not smile at you when you pass by me, i may not even notice you and i am sorry for that.  All of this has opened my eyes to the fact that there are other people in the world that may be fighting some battle....it could be illness, a death in the family or a divorce...all of these things are a battle someone is fighting deep down inside.

Some of you may be wondering if I am ever going to go back to work.  HA HA HA!  The answer is Yes!  I just don't know when.  I want to go back to work, even if its just to feel part of society!  I'll admit that I am a bit nervous about it.  Job hunting is annoying and then I add on "Oh yeah, I can't work because I  have dialysis/clinic/doctors appointment/low iron/migraine/what ever else happens".  No stress there!  UGH!  But yes, I will be looking into getting a part-time job and/or going back to school!

I think that's enough for today.  Just remember everyone is fighting some type of Invisibility! Be Kind to those you meet today!

Much Love and Kidney Wishes,
Katie