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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Current Disease Status & MS Poetry

MRI Results and MS-Inspired Poetry

I have not felt well, when I usually do. The prolonged infection and subsequent 4 (ugh) antibiotics have left me depleted. Numbness is surfacing more, I've had intense fatigue, frankly, it's been scary. I knew something was off, I have just prayed it's not a major relapse or disease-progression. I was kinda hoping to be one of those patients who don't relapse...wishful thinking.

Luckily, I went with my gut and got into DeSabrio, my neuro, right away. MRI's were ordered and scheduled for May 21st.

Shout-out to the radiology team at DRMC:) I’m there enough that they recognize me and are unfailing kind & compassionate. Lying in an MRI machine gives you time to think. Thanks to therapy, I've been able to create a safe space in my head where I can go when I'm feeling trauma or stress. I was able to escape there and had the words come to me. I am a writer, a poet--but I've been avoiding doing much writing about MS. However, writing is therapy, and I need to process all this and thought I would share.

The MRI went well, no reaction to contrast this time! I read the results right away and was confused by the activity in my C-spine. Brain is in good shape, no changes--excellent news because I kinda dig my smart mind.  However, my C-spine showed activity in the lesions, but no disease progression or new lesion growth. Luckily, Kelsie Montgomery, PA, called me first thing this morning. My scans came in on the 22nd. She and DeSabrio (my neuro dream team) analyzed results and made a plan.

Turns out it was really good I got in when I did. My lesions are irritated, mad, angry and are flaring up. This is causing the subtle symptom increase. So, it's a mild relapse. Minor. Small. Present.
I never wanted to relapse.
After a teary call to Justin, who reassured me I'd be ok, and reaching out to my support system, I shored up and focused on positive mindset and my faith.
Yeah, it's disappointing.
But, it's out of my control.
It's probably due to infection/antibiotic frenzy, but there is no way to know.
I do have a very proactive team and I'm going to be ok.
As my friend Jen told me: "this is a speed bump, not a brick wall."
So...
plan is to report to the hospital's infusion clinic for the next 3 consecutive days. I'll be receiving an infusion of the cursed, yet curing, Solu-Medrol mega-roid. Infusions should last 60-90+ minutes. My friend, Jenica, frequents the infusion clinic for her medical conditions (we have sister diseases) and will be there, which will be nice to have an insider guide! After the 3 days o' wonder, I'll be on a low dose steroid taper for a week and see my neuro team mid June to reassess. If I relapse again, it will be a new treatment plan, which I'm hoping to avoid.

All is well. 
I'll keep marching forward with faith.
It's perfect timing to heal. My last round of Solu when I was diagnosed in 12/16 left me weak and reeling. I'll have the summer to heal and I will be ok.
My continued thanks for the prayers and support. 
I've got this. 

Musings on my MRI
5/21/2018
People who don’t know MS 
don’t give me the look. I can’t fool the 
radiology department though. 
The look is equal parts 
compassion and sorrow—
an unsettling sense of
validation. 
Slowly I lower myself on to the
sliding slab, encapsulated with a 
mask over my face, 
a blanket covering me like a shroud 
to stave off the chill,
arms pinned to my sides as
I’m moved into the tube—
as narrow and 
quiet as a tomb.

I’m instructed not to move as I
attempt to lose myself to classical
music soundly loudly in my ears.
But not even “Moonlight Sonata” 
can drown out
the swelling cacophony of the
machine’s jackhammers, whirls, 
banging and
vibrations 
searing beneath 
my skin, bones, 
tissue and veins
creating a picture of the battlefields
where my body has attacked 
itself, leaving ragged tears 
in my brain and spinal cord—
delicate nerves
raw, exposed, confused
sending an SOS 
throughout my CNS.
Fruitless distress calls
misinterpreted, 
manifesting symptoms I 
cannot control.

Contrast is injected,
a veritable floodlight
illuminating the creases of my brain,
shining through opaque density of 
my spinal cord, looking 
for evidence of destruction. 
Still unaccustomed to this brave
new world, grasping to
understand the reality of it all;
I rise up,
thanking the radiologist
walking slowly to my 
car against a 
darkening sky.

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MRI Results and MS-Inspired Poetry