Tuesday, May 22, 2018

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.

2 comments:

  1. My heart is with you. I know some of what you are going through. You are a rockstar! You can do this!!
    Thank you for being an inspiration.

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  2. Rachel, I am so sorry for what you have to deal with. You are an amazing person. You have a wonderful talent and I am glad you are able to use it to get through tough times. Thanks for sharing. -Kami

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