When there are no words…sometimes you just need to…………BLOG!!

Sometimes, when you’re having trouble expressing yourself, for whatever reasons, it’s time to BLOG!! So, this past year has thrown me a shitload of obstacles…most were just annoyances that I could handle. But, when the Red Sea parts and the obstacles start gushing down on you…when you start sinking to the bottom from the sheer weight of them,..when you start gasping for air….it’s time to BLOG!!

My illness is progressing. It’s having a party and I’m sadly invited. Except for a select few, I really haven’t shared most of what is going on. And, even then, I have not shared everything with those select few.  My increasing falls, the dizziness, the extreme weakness, the incessant pain and burning throughout my body, the ever increasing inability to complete sentences, the eyesight that feels like a heavy fog that refuses to lift and the neuralgia. My latest symptom has hit the face…..IN YOUR FACE. It feels like an unknown entity is literally pulling my left eye and mouth down. Dude, if I start drooling, I am out of here.!! So, I go undercover. I wear huge Jackie O sunglasses to hide the droopy eye. I wear carefully selected scarves and wrap them around and around my neck until they strategically cover my droopy mouth. Oh, I look hot…let me tell you…I stop  traffic. I now use either a cane or a walker so I don’t fall limp on the cement pavements.  Maybe, I should just throw a huge trashbag over me and be done with it… you know…..punch holes in the eye and nose area so I don’t totally walk into a tree. I’m too fucking young for this shit.

Each day, I swear, I can feel the myelin surrounding my nerves, melting. I think I can hear it, too. That precious myelin that protects the nerves and keeps them from screaming bloody murder. No one can see the melting myelin. No one can see the white lesions invading my brain. No one can see the screaming nerve endings. All they do see, is the fucking scarves, sunglasses and canes that decorate my persona.

Self pity??? Maybe a little. This is reality, folks. ..it’s punching me in the throat. Maybe tomorrow, I’ll punch it back. Right now, I’m just too fucking tired to lift my arms


11 Comments (+add yours?)

  1. taraleigh2020
    Oct 29, 2014 @ 20:40:06

    I’m sorry you’re suffering. Sending love. Blog on.


  2. jdbross
    Oct 29, 2014 @ 20:49:49

    You have every right to have a pity party and I’ll even join you and listen to you while supporting you with all my love. I love you my sweet friend!!


    • jane
      Nov 02, 2014 @ 18:35:04

      Thanks, Jenn. You’re so sweet. I wasn’t going to write this, but…well it just came out of my brain 😉 Pity Party Peeps


  3. honestme363
    Nov 22, 2015 @ 16:37:21

    Thank you for the honesty and insights Jane. You are right – sometimes you just need to blog and let it all out. Sending hugs for support.


  4. Pamela Spiro Wagner
    Nov 29, 2015 @ 19:40:12

    Jane, i know this is a hopeless endeavor and i will be laughed out of the blogosphere for it, but has anyone done any serious Lyme Disease inquiries in the case of your illness? Check out Bell’s palsy and Lyme disease ( very frequently the two are chicken and egg related, lyme inducing bell’s palsy, which is what your facial symptoms sound like to me…) Also, the MRI white matter hyperintensities and the demylination are NOT only seen in MS, despite what your dear doctors may tell you. I had both with very serious Lyme disease as well as devastating fatigue and bone demineralization yadda yadda and you know what? After long, long term treatment with a very patient Lyme literate doctor and several courses of antibiotics and anti-malarial drugs for three tick-borne illnesses that no one else had thought to test for, i am finally better….i frankly think both fibromyalgia and MS are wastebasket diagnoses that subsitute when doctors refuse to look for the real cause of an illness that is likely to be infectious in origin.

    Best of luck to you.

    Pam W.


    • jane
      Nov 29, 2015 @ 20:30:58

      Thank you for this info. I did have several blood tests that ruled out Lyme. I had a spider bite yrs ago…two punctures on my ankle that caused leg pain for a month..treated with antibiotics. At this point, I have no idea. All I know is, I did work in an old building where 4 people contracted Lupus and other autoimmune illnesses..3 of these people are now deceased from their illnesses. I do know one thing…I do not trust doctors xo


  5. thelonelyauthorblog
    Dec 31, 2015 @ 20:13:00

    I have always used writing as my therapy. Blogging has now served to do the same. I hope blogging and writing ease your sorrows.


    • jane
      Jan 01, 2016 @ 15:14:24

      I agree. I, also, use my photography to escape. I don’t really have sorrows. They are more like obstacles…but this year, taking advantage of them and flipping them around to creativity. Keep writing and Happy New Year xo


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