Hopefully, there won’t be many posts like this, but I feel the need to be totally honest and share where I am at this moment in time.

Today I was down almost 3 pounds, JUST from doing a short bike ride yesterday!  This ride would have been no challenge at all, just a year ago, but yesterday, coming up the hill on my way home, just about killed me.  I have so little stamina and that is exceedingly difficult because I have been so athletic throughout my adult life.  I look at my shrinking body in the mirror and I wonder who she is.

We are planning the White Rim Trail trip which begins on October 1.  Therefore, my weight loss after one simple ride is of great concern to me.  The problem is that since my tongue is nearly useless, chewing food effectively is almost impossible.  I know that since digestion begins in the chewing process, I am swallowing far too quickly, just to get the food in.   Eating is no longer pleasurable.  It is work and it is an endless process.

During the last trip to my neurologist, he told me of the need to place a feeding tube in order to effectively bring essential nutrients to my body.  While I was already experiencing great difficulty eating, the thought of having a foreign object permanently placed in my body was abhorrent to me.  I told him I wasn’t ready.  He reluctantly agreed, and assured me that when it is placed, I’ll feel enormous relief because I won’t have to obsess about getting enough food into my body.

This, like all of the other physical realities I’m facing, becomes acceptable.  I am now at a point where I am looking forward to the relief I will feel when this problem is resolved.  However, in accepting these physical realities, I’m acutely aware of how this disease is taking over my body.  Sometimes I feel afraid.  Sometimes, I am very very sad.

I have enjoyed robust health my entire life.  I have always been a highly energetic individual with endless supplies of enthusiasm for living.  That has changed.  Much of this enthusiasm has waned ……….I watch other people, excited about a dinner out, drinks with friends, hiking, biking, having coffee together enjoying rich and colorful conversation and I know that those moments, for me, are now few and far between.  I am no longer the woman I used to be.  I miss that life; I miss ME!

So many people tell me that my writing inspires them and so I am loath to include this post among the other uplifting ones.  Those are just as true for me as this one.  But I feel as though it is imperative for me to be honest, not sugar-coating my reality, in an attempt to inspire.

These days I have a few goals for the day, which tend to look like this: take Mollie for a nice 45 minute walk, giving her plenty of time to enjoy the sights and smells, Windexing the tables and a couple of mirrors, writing in this blog and having a nap.  This is not ME!

A good lesson I’ve learned is that it is not important that my house is immaculate.  After getting Mollie at eight weeks, I was forced to relax my priorities around house keeping somewhat, but now, it just doesn’t bother me that it doesn’t look perfect.  The perfection, by the way, was for no one but myself.  I love to see my home shiny and clean, orderly.  Somehow that was comforting, but no longer.  I’m so grateful to Chris who has picked up the slack and now vacuums the whole house, does all of his own laundry, even shines the living room glass tables!  He’s great!  He has always been an awesome cook and I love all of his delicious meals.

Today I am far away from my spiritual center which is so important to me.  Knowing this, accepting its truth, I am tearful.  Tomorrow will be better.  I focus again on “One day at a time” and remember my belief that this IS my journey.   While I would never have chosen it, I know there is a reason that it is mine, and so it is.