IntrinsicTina

I've just put a cap on the final episode of a Sons of Anarchy binge fest, and I'm reflecting on my own life experience with bikes, bikers, and outlaw motorcycle clubs.

I learned a bit about Danner ancestry. My sister, Dawn, is an avid genealogist, since joining Ancestry.com. During her visit today, she revealed that our great, great grandfather was a war hero, dying in the civil war; fighting and dying, from dysentary, after being wounded in battle. I was relieved to hear that he fought on the Union army's side, fighting for social justice and human rights, specifically the equality of black people, the abolishment of slavery. She mentioned that she had poor grades in history due to lack of interest. She told me that always felt that history didn't pertain to her. Frankly, that's true for me as well. Memorizing dry dates was so disconnected from our lives, that their significance was lost on us. I felt cheated out of our heritage; she must also feel the loss. Somehow, our 92-year old uncle didn't impart the knowledge to our father. The first Danner to land in America, did so in 1727, nearly 50 years before we became a country. He ...

1 1 2 Towering dogwoods pale yellow in full flower, azaleas and rhodies in fresh bloom, splashing fuschia and crimsons, heavy lavender lilac blooms reach for the sky, while delicate bluebells and white cotton spears carpet the garden floor. But, this is not the garden, it's only the parking lot of my hospice house. Gentle breezes lift my hair, sunshine kisses my arms, warming my smiling, up-turned face, thinning my blood; while the shade reminiscent of winter's grasp, prickles and pokes at my flesh. My first escape from my ALS-inforced prison in months. I'm propelled in my fancy carriage, by my husband's gentle hand. He continues to visit the ruin of his financial life, the love of his life...Me. We've enjoyed 20 springtimes together, breaking out our motorcycles to tour the daffodil fields of Puyallup, Skagit Valley tulip fields, or fuschias in Lewis County; planting dahlia tubers, vegetable seeds, onion sets, flats of marigolds, pansies, and primroses; thr...

I wish that my caregivers were allowed to access my blog. I guess for the sake of privacy laws, I lose what could have been a very valuable resource to communicate. Early on in my AAC device using days, I explored ways to type and save documents using my eyes. I was delighted to find a method to save document files, right on my Tobii Dynavox device. Unfortunately, I also quickly discovered how easily it was to overwrite or, simply, delete a file. Not at all like a Microsoft product. Much too volatile. I find it impossible to describe how morale crushing it was to pour heart, and dogged determination into describing a best practices on my care to find it vaporized precisely when I needed it. I tapped my Microsoft resource who said "not a problem" but it never materialized. People forget. That left an online resource; I already had a blog but would it be compatible with gaze technology? It was. Now I, painstakingly, peck out my heart, soul, complaints, instructions, blurb...

. Literally!  When the plumbing stops up, life is not so jolly...So you should opt-out now if graphic defecation or the unvarnished realities of ALS offends....Cause it's about to get real.

I do not know what to do about my mucus drainage issues. 

Renee´ was my sister, my youngest, my first baby. She was born in sunny California, near the beach, amid palm trees, bus exhaust, row apartments, and strip malls. Mother was bartending the waterfront, in dive bars like the White Stallion. Daddy was a wet-behind-the-ears sailorman, seven years her junior. Despite the baggage of having two children, he was lost to the allure of the shining star spitfire, that was our mother. Renee´arrived to the delight of her older siblings, since we already had a neighbor baby, whom we coveted for our own. Two weeks before Christmas, we were gifted with our very own precious blond-haired, blue-eyed cherub. For the sibs, the bloom fell off the rose quickly as our "fetch me" list never ended.  Fetch me the diaper bag. Where are the diaper pins? Get me the baby's bottle, the rubber pants, my cigarettes, my car keys, the clothes pins... After the fetch me list came the chore list. Play with your sister. Watch your sister. Wash the poop ...

My chief challenge right now is mouth management. That is not a euphemism for not swearing, though a few caregivers may argue that. I'm talking about the very things that healthy people never even think about; the  lubrication of mucosal linings and mucus evacuation. ALS has blessed me with an overabundance of mucus, otherwise known as secretions, and has taken away the ability to manage that abundance. A healthy body just clears it away by salivating then spitting or swallowing. I've lost control of my tongue, along with air pressure, thus I cannot spit nor swallow properly and must create work-arounds. My ALS doctor, actually the pulmonologist, prescribed two machines; the suction machine to remove secretions from the mouth and throat, and the cough-assist which brings secretions back up from my esophagus and trachea (windpipe). Both of which can be very traumatic. There is nothing quite comparable to having a hard plastic wand rammed down the gullet, or into the soft pal...

Ya got me! Blatant false advertising; I have no intention of talking taxes. In my defense, I figured nobody would read a post titled Upon My Death. Am I right? 😼 ...Not that tax is sexy...