Beyond the Outside Layers

journal update

I`m frustrated, confused and spinning in circles in my mind. I know the answer isn`t to throw my hands in the air and quit, but that`s what I feel like doing at this moment. I`m tired of tests and answers that lead to more questions and then more tests.

On Friday, I underwent three MRI`s consecutively, with and without contrast. I am what they call a “hard pick”. My veins hide deep and roll and jiggle out of the way of being poked. Let`s call it a survival skill. 😋

After 5 pokes between both arms and hands, they called in ultrasound to locate and secure a volunteer vein on poke number 6.

Two and a half hours later I emerged from the tunnel of clicks and knocks to once again join society. Nothing to it, once the very friendly techs released me from the cage surrounding my head and helped me up and off the table.

I returned home to finish out my day. While facetiming my oldest daughter, we were talking about the procedure I have coming up Tuesday and that I`d get the results of the MRI`s on my follow up appointment Dec. 1st. She had no sooner mentioned that if there was anything important that the doctor would call me, when the office beeped in.

Hurriedly I let her go to answer the call. That is when I was hit with the news. It was the nurse informing me that the doctor has sent in a referral for me to be seen by the Neuroscience Institute as soon as can be arranged.

I have so many questions and my mind is trying to consume every detail I can to extract from the phone call and from my prior visit.

Demyelinating disease of the central nervous system but no active demyelination? I don`t understand completely. I know he was thinking MS might be a better diagnosis than the Atypical Parkinson`s I was diagnosed with over 2 years ago.

Below is one of the MRI images of me. Yup the inner me 😉😂As you can see I`m a little twisted. I think that`s where I draw my humor from.

I thought that with a positive biopsy for Alpha synuclein protein, that it assured the Atypical Parkinson`s diagnosis. My case is complex, accompanied by other factors of my health.

I want to breakdown and sob but instead I laugh. Of course, my condition is complex! I am anything but ordinary, I state to myself. Part of that declaration is spite, and the rest is pure desperation to build determination to fight on.

This is separate from the gastrologist who suspects I have cancer of some form within my digestive system. How I wish not to be piecemealed out, going from one doctor to another, each treating their specialty while I am a whole person and each system is connected within me.

You may guess what I did next. I looked up information about this Neuroscience Institute and the Dr. he had referred me to. From what I can gather so far is, that at this place, a team of doctors over sees your care and it all comes from this one place.

The holidays are upon us, and Thanksgiving will be low key for Billy and myself. We will do a turkey dinner when our brother visits in-between the holidays.

Wishing everyone a superb holiday season! I am thankful for all I`ve been given in this life and the ability to share with you all here on Substack. 💞✨

✨Be the Light