Friday, October 5, 2018

Current Disease Status & MS Poetry

Let me be honest, if I can write about it, I can handle it.
Writing is therapy for me as I process the reality of living with this disease.
Sometimes it's terrifying and I am sick about the future, 
but I have to pull myself back into the present and stay there.

Disease update: I'm stable and grateful.
I'm fighting depression, but I'm on the upside. 
Depression is one of the most common symptoms of MS--
mine is minimal, but present.
When I act weird, or don't show up...
I'm sorry, it's never you, it's me--it's the MS really.
Some days are worse than others.

I did have a viral infection about a month ago. 
A cold can quickly turn catastrophic. 
After my illness last spring, I've decided I cannot do
antibiotics ever again if at all humanly possible.
The risk of relapse is too high and scary. 
I never know when the damage might be lasting.
My immune system is so, so very messed up.
I've added a kinesiologist to my dream team. 
A Dr. Astle, who also specializes in vitamin therapy.
We knocked it out with massive doses of C and D. 
It was nothing short of miraculous. 
New numbness, that I assumed was MS related, ended up
disappearing with the right chiropractic adjustments.
I am so grateful.
A bit more spasticity--
either bed-shaking muscle spasms (when I'm under too much stress),
and a new one where it feels like my collarbone pops.
It makes me jump and have flashbacks about that 
creepy clown that used to be in a box and pop out unexpectedly. 
Goals: better stretching, more stress management.
I've never had such a busy time in my life and it's wearing on me.
More yoga, more meditation, more breathing...
anyone know how I can get more time?

Many, especially a beloved nephew, are walking through far more
scarier medical issues than I am, 
but disease is disease, and this is mine to figure out.
As I ponder what my little nephew and his family are facing with cancer, 
I thought of that terrible disease as a personified unwelcome house guest. 
this poem kind of came together in a far different way than I anticipated. 

It's the first time I've been able to write with humor, which is a step in the right direction
towards my own emotional grappling with a lifetime of MS.
Speaking of my nephew, follow his story here: GoFundMe4Ethan
I ask for your prayers in his behalf & as always, thanks for reading.

my neMeSis
nemesis: a long-standing rival; an archenemy

Blowing in like a hurricane,
he is all brass, cloaked in entitlement.
Pushing me to the ground, gingerly stepping 
over me, dragging his over-sized suitcase,
smacking me upside my head.
What the? I snarled
My friends call me MS, eyes narrowing as a 
saucy smile spreads across his sunken face.
I'm part of you--you know, 
the part nibbling at your brain and spinal cord?
Yum, he threw in for spite as my 
mouth gaped open in shock. 
Oh, he added, feigning surprise.
No cure--so I'm here for duration doll.
Swaggering to my room, he began unpacking.

This is war.

Glaring at him, I shove the needle full of glatiramer in my 
exposed stomach every other day. Sticking out my tongue, 
I pop handfuls of vitamins each morning.
Laughing, I give up gluten, sugar and dairy, 
trying to starve him out.
You're killing me bird!
he moans as he becomes noticeably smaller.
That's the point moron, I snap back,

Marching around my house 
I chant "remission" at the top of my lungs.
He silently flips me off, pointing to his 
"resting relapse-face" t-shirt. 

One day, my MRI shows my lesions had shrunk
the tiniest smidgen, I smile in quiet joy 
as he moves downstairs, sitting up shop in a dark corner,
plotting my eminent demise.

When the flares come, taunting me I hear,
Hey, enjoy walking, you probably won't in 20.
When I awake at 2am with spasticity shaking my bed, he grins
Wakey, wakey--no more sleep for you sucker!
When fatigue has me bent over, hobbling through a 
crowded parking lot, he whispers,
Wouldn't handicap parking be divine?
I growl a reply, I'd run you down with my wheelchair.
He sulks, 
never really appreciating my humor.

So, wearing my orange ribbon, I blind him with hope,
crushing him with resilience and a side of sass,
waiting for the day when 
medicine embraces dreams, when
elusive cure becomes reality, 
and he will be finally be evicted,
for good. 



One of my reasons to carry on:) 


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