January 26, 2014


i have spent the last 3 months in a desperate and lonely struggle for my body and mind. it is as if the ground opened up and swallowed me whole...and i have had no desire, inclination or ability to claw my way out of the pit. and i'm not out of it yet. not.even.close.

there have been no postings since november 4 because it has been bad. very bad. it all got a lot worse immediately following that last post.

it all just feels impossible to explain.

november and december passed by in a blur 
both sparky and i came down with pneumonia
that stretched on for 6 weeks

followed closely 
by a 4 week bout of strep 

my tremor and twitching attacks that i blogged about in my last post (started in october) are still ongoing
so is the never ending bouts of daily vomiting.

the bout of pneumonia exacerbated and significantly increased my vomiting and even though the pneumonia has now resolved, the vomiting has not decreased.

there appears to be no end in sight. 

my medical team is trying to figure it all out.

i have lost 11 pounds. i have adrenal and thyroid issues, soaring ACTH levels, hypoglycemia, anemia, blistering sores and rashes, hormonal imbalances, sound sensitivity, head pressure, nerve pain, insomnia, nausea, nutritional deficiencies, anxiety and panic attacks
the dog is pooping out my hair.

say what?

the dog is pooping out my hair.

yes. you read that correctly.

(my hair began its mass exodus in december. every where i go, i leave a trail of it behind me. the dog is swiffer-like and is always tailing me...you can use your imagination to fill in the rest of the details.)

like i said its all sort of unexplainable.

that's not even the worst of it
that's just the tip of the iceberg
i don't currently have the words or the where with all to explain what lies submerged beneath the icy surface

to see me no one would ever know all that is going on
which complicates matters.
i look fine
maybe a bit thinner
more or less, i look healthy

that just makes everything all the more difficult to explain

so i don't even try to explain it anymore

unless someone knows what to look for or sincerely wants to see it, i am invisible and so is my pain and struggle. and i suspect i'm not the only one who feels that way.
in fact, i am acutely aware that there are others that are hurting and fighting their own private battles. 

this week, i came across two things 
and i felt compelled to share them.

so i am crawling out of my cave of the unexplainable to share them.

the first is this letter that my daughter avery penned a few years back

the second is a post that was penned by my friend and fellow blogger, Michelle at My Lyme Symphony. reading it left me blessed me and weeping all in one breath. 

Please visit Michelle's blog, My Lyme Symphony to read the entire post.

Here's an excerpt from Michelle's post, to get you started - 

I understand you.

I understand the depth of what you go through. I understand the undercurrent of emotions. I understand that you've lost so much along the way. I understand not everybody can see it.

I understand how very different life is now. I understand your uncertainty. I understand those moments of despair. I understand the limitations and how frustrating they are. I understand the loneliness. I understand the brokenness. I understand the words that are often left unspoken.

click here to go directly to the rest of her post

may each of you somehow find comfort and peace amid the heartaches and heaviness in your life.


Anonymous said...

"You and Parker have endured more than any person should ever have to endure. May you feel some relief with some or all of your symptoms. I always know things are not good, when there is so much time in between your blog posts. Avery's letter is beautiful - she is a very wise 10 year old - brings me to tears. May you feel understood. May you feel that others care. May people write on your blog, so you know they are reading and praying for your family. May others reach out to you and your family, in some way, so you don't feel so alone. This has been such a lonely and isolating journey. May more people jump on board, and not get off. You need some encouragement right now! May peoples hearts be tugged at, to 'do something'!!!! I am really looking forward to seeing you soon. Take care, praying for you and your family."

Take care!
Hugs and continued prayers,

Linda Wainwright said...

Don't ever think you're "forgotten". I know where you've been and where you are....the long nights when everyone else is asleep and the panic hits that your life is passing you by. I pray for you and your whole family often. I find the only thing that helps me pick myself up after every meltdown is getting back my weak grip on Hope....hope that God knows exactly what is wrong and where, and He knows exactly what is required to fix it, because He made each and every cell in my body.....and hope that He knows exactly the right time for this to all be over - He has a concrete plan. I cling to the hope that He loves me and most of all that tomorrow may be the day that sees the completion of His perfect plan when we get to move on. May God hold you close in His loving arms so that you can truly FEEL His presence. Linda W.

Jackie L. said...

Hello Shannon, I have been catching up on your blog this weekend. As of the latest post, it sounded like you were facing many challenges. I hope there has been some improvement since then, but if not, I give you these lyrics from the song "I Count on You":

God, You are strong
And I'm safe in Your arms
Make me brave all day long
I count on You, I count on You.

With thoughts & prayers,
Jackie L.
Victoria, BC