Skip to main content

Road Trip!

On the road again… We left our home at 2 o'clock in the morning on August 30. We are Ohio and Virginia bound to see my father and stepmother as well as my 88-year old uncle.  We plan on making many stops along the way...Glacier Natl Park, Mt. Rushmore, among others.  

What's unique about this trip is that it is being made on a shoestring budget, in a 2001 Dodge Grand Caravan VMI (wheelchair conversion) van hauling a woman with ALS, namely...me.  We are loaded up with all the requisite paraphernalia including power wheelchair, manual wheelchair, bedside commode, multiple pillows, my Deanna Protocol meds, prescription meds, clothes, and other crapola.

A couple of rest area naps and a bank stop in Spokane.  Reluctantly we bypass "Pig Out in the Park" to stay on course for Missoula where Tom Beaudette is "keeping the light on for us".  A handicap-accessible room awaits and we actually have a confirmed reservation.  Not our norm.  A shower will be great...as the humidity is dripping as we crest 4th of July pass.  Whew!

We bypass gorgeous Lake Coeur d'Alene pocked with small watercraft tied to log booms awaiting their Hydroplane Holiday weekend as well as the picturesque Cataldo Mission.  Pitstop in Kellogg to mail some bills...wishing I could ride the Silver Mountain Gondola.
Labels:

Comments

Post a Comment

Popular posts from this blog

I Remember...

I remember catching fireflies,  putting them in a jar, as a girl of five. I picked pears off a tree that overhung an alleyway on my route home from school, then enjoyed the forbidden fruit. .I had a golden cat who chased a gray mouse through our living room sending my mother, 3-year old sister, and me screaming atop the sofa and chairs. We lived in a farmhouse and I watched Romper Room. A daddy longlegs skittered across my dirty kid legs as I teeter-tottered on a broken kitchen chair back. I played grocery store and laid out a bedroll for group nap time in preschool. We lived in an apartment attached to a bakery. My maternal grandparents visited and a photo was snapped. Grandma held Dawn and Grandpa held me. I held Grandpa's chin. Walking through the back of the flour-caked kitchen, I saw scrumptious pastries and colorful toys stuck in the cupcakes with my hungry kids eyes. We lived in a two-story apartment building next door to a large farmer's field.  That field was my...
3 comments
Read more

On-the-job Sass

I continue getting sass from one particular caregiver. He says, "You need to communicate with us." he continues to completely miss or dismiss the concept of I would if I could . It is part and parcel to having ALS, I am losing my ability to communicate and it is his job to assist me. Part of helping me, like it or not, is to learn my routine and anticipate needs, when possible. He misses the fact that I'm failing more every day and night time is when I'm weakest. It is extremely insensitive and arrogant to expect me to cater to his needs and expectations. Pushing me to repeat words or expound on a simple one word suggestion is physically taxing on my system, adding stress which further depletes me. Cuing is supposed to be caregiver's domain, not the patient's. Here is the situation, I am being changed. In the midst of the action, as seems to be his practice, he is sidelined asking me trivial, meaningless, but energy-sapping questions. Do I want my legs raise...
Post a Comment
Read more

Lashing Out

Fed up. Sick of hearing, "I'm sorry."  Apologies don't erase the pain you inflict on me. You pull my pubic hair. Your nitrile gloves pull the hair from my head. Not once in a while but day in and day out. You turn me in a manner that suits you rather than in a manner that doesn't stress my body. Why won't you use the pad and sheet to turn me as one unit? Instead, you allow my body to twist as you hold me one-handed. How good you are at your job. What part of "my muscles are dying" don't you understand?
Post a Comment
Read more