Scarred and scared

I remember a boy in 4th grade telling me he knew how to spell dessert verses desert because you want more dessert so there's more S's. 

That has nothing to do with this blog except my clever title reminded me of it. 

Moving on. 

I’m sitting in the bath praying that this hot water will have the magical healing powers that it used to possess for me.

As much as I try to avoid it I can’t help but glance at the body that’s bobbing under the water. (Wait. That sounded horrifying. There’s not a decaying body in the bath with me... I meant my own body...) I saw a scar I haven’t noticed for a while... I examined it until I finally realized it's from the JP drain I had after my urostomy. (It’s a clear bulb that fills with excess blood after surgery and is emptied with a devastating sound that surely kills fireflies or something dramatically terrible.) 

Then I started laughing out loud. (The echoey confines of the bathroom made the laugh sound menacing. What a freak.) It’s hilarious! I’m so scarred that I can’t even remember what gruesome scar is from what! 

My body is covered in stretch marks from a pregnancy and weight fluctuations, freckles from the sun, dozens of surgerical scars in various sizes and shades of pink, a bright red pulsing stoma, a urostomy bag half full of pee hanging off my abdomen, and a PICC line with extension tubing dangling from my upper arm. Plus all the blubber and blemishes most 30 year old women would complain about. 

My body is floppy and flabby, marred and mired, scarred and scoured...

It's... not great. 

If it was a car it would be one with multiple parts held on by soggy duct tape with a mismatched hood and a black trash bag window. 

Rough. 

But it's nothing compared to the inside. 

After 17 years of chronic and acute illness and sickness I think my  interior would resemble that of my brother-in-law's old project car that had a milk crate as a drivers seat... 

I’m starting to realize even when I start feeling better this rattletrap isn't going to start up on the first try and happily glide up a mountain. 

No sir. 

First I have to take it off the concrete bricks holding it up then listen to the hopeless clicking before a sputter and spit brings a promise of forward motion. 

It will take time to just clear the moss off the windshield.

This metaphor is getting away from me.

The point is. I've progressed leaps and bounds but I can't possibly expect to be in tip top working order... 

I've had a hard time trying to understand what is my new normal... Am I still chronically sick with bouts of feeling well or am I actually a healthy person with frequent spells of unjustified misery? 

What I'm asking... is a zebra black with white stripes or white with black stripes? 

I guess it doesn't matter but it's so hard for me to know what to say when people rave and celebrate my "good health". I let them applaud my progress because if I think about where I've been over the last few years, I really have made progress! 

So here's what I, and probably lots of others who struggle with chronic pain and illness, want you to know... we have good days and bad days, we have good weeks and bad weeks, maybe even good months and bad months but don't mistake a burst of energy and feeling better for a conclusion to our sickness. 

In fact, the bad times that follow the good... no matter the length of time.. are so much harder for us because we caught a glimpse of "normal" but then it went away. So then when we are back in bed for hours or days we know what we are missing. 

Right now I’m in a horrible cycle that brings fevers then blood in my urine then pain in my kidneys, abdomen and stoma. I’m exhausted and nauseous. I'm discouraged and desperate. I'm also terrified.

Something is wrong. 

I had a CT the other day and in a couple days I’m a having a loopagram... which unfortunately is not an exhilarating roller coaster with free graham crackers like the name makes me wish... honestly I’d wish for it to be almost anything other than what it really is... they will put a catheter in my stoma then inject dye into my Frankenstein urinary tract then scan me. 

They told me I need to have a driver so I’m hoping that means they’re going to drug me... 

If they can't figure out what's going after these tests then they might need to send a scope into the stoma and look at the conduit from the inside. They're going to need to need an elephant tranquilizer for that one. 

I've been forced to become a lot more brave and tough than I ever wanted to be but I still can barely look at my stoma and I've never intentionally touched it and now with all this crazy business it's so sore! Not to mention all the blasted work we did to make and then maintain a functioning urinary draining system... Now they want to... penetrate it. Not to sound like a total millennial but I truly CAN'T EVEN. 

Pray for me. Over and out. 

(I'm having a really hard time figuring out the tone and overall theme of my blog as a whole... I haven't been posting because I didn't think it made sense but I am at the point where I need to write and I figured I might as well post my ramblings... Hopefully one day I will figure it out and it will be a well constructed, reliable, relatable blog but... Don't hold your pee. (Get it? Like don't hold your breath but I said pee. HAHAHAHA!)