IntrinsicTina

A goldfish snatched from it's bowl, writhing and wriggling, silently gasping...

  Have you ever used the internet to look up an old flame? How about an old arch-enemy? Did you have the intention to reconnect? Me neither.

Can a chocoholic have other confectionary favorites?

It's funny what we look back on years after the vacations are over. I'm thinking about road trip food. Not the oodles and gobs of burgers and fries, and disappointing cafe food but our own food from home to curb costs and extend our healthy choices. My idea of travel food was Italian chicken sandwiches on ciabatta rolls that we toted across Washington, Idaho, Montana, and Wyoming during our summer vacations. I'd boil up several chicken breasts, then pull apart the meat from the bones. Into a bowl, I would place chicken, jarred pesto sauce, sundried tomatoes, parmesan cheese, extra virgin olive oil and mix. Then in a large ziploc bag, would go the mixture, ready to be spread upon the ciabatta rolls. No additional condiments needed. No mayonnaise to worry about turning and poisoning us. My husband's domain was gorp, otherwise known as trail mix. Wikipedia says that it was once known as "good old raisins and peanuts". That wouldn't fly for Tina and Rod. W...

My poor, put-upon husband (he thought), when pressed into service, for household chores, dumping cat sand, and trash to his many cans system (his method to avoid exorbitant garbage curb service). He would go into a dirge and sing: I'm the Cat Poop Man, I'm the Cat Poop Man, that's all I am, The Cat Poop Man.  Then, as he slunk out the back door, he conversationally tossed out, "...And I don't even like that cat."  Neither the cat, nor I, believed him.

Grandma had the power. She could make boo-boos feel better and mend a shattered, little girl's self-esteem.

Grandfather drove bus in Hollywood during the golden age, "You go Vilshure, you go Wine?", the little Jewish men would ask of him. He was a very attractive, well-pressed man about town, intent upon rising above his humble, poor, dustbowl beginnings.

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.

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...

   My daughter is the pride of my life. She amazes me continually. She is strong, so much stronger than myself, at the same age. I've seen her do a yoga move that has her balancing on one hand, while she looks as if she's sitting cross-legged, suspended in midair. She is lithe. She does yoga poses on the paddleboard. One foot planted on the board, the other drawn up gracefully behind her, and held aloft, while the other hand poised high. All while balancing in the bay. She is mentally strong. I saw her end a 6-year long love relationship that she decided wasn't working for her anymore. Then go on to maintain a cordial relationship in the aftermath. Who does that?! It's so...Healthy...no character assassination, no hateful backward glances. Nothing but a status change on Facebook. She went out rented a new apartment, ordered up new furnishings online, arranged for friends to help her move out, then pulled the trigger on the deal. Then she went about the business of r...

Telling people what I need. It's the bane of my existence. I have ALS, amyotrophic lateral  sclerosis, or Lou Gehrig's disease. As such, ALS has no treatment nor a cure. It has myriad symptoms that lead ultimately to death: mucus gone wild, muscle spasms, emotions hijacked, paralysis, swallow insufficiency, and voicelessness, to name a few. I'm going to pick at voicelessness, actually unintelligible speech. Yeah, I  make noise, but few can discern what I'm saying. Unfortunately, I have a high number of caregivers unfamiliar with intricacies of my care. As such, they all think they are capable of attending to my care needs but, sadly, they are not. Take turning me in bed, as in the numerous diaper changes I require in a day. Due to muscle atrophy, or death, surrounding my lungs and chest, I use my belly and diaphragm to breathe. This requires my caregivers to handle me by my shoulder and hip, and not to lean me against their body. They don't naturally do this whi...

Fun Fact: This is the first time, in two weeks, I've been able to feel the backside of my front teeth, due to mucus encasement. It is also the first time, in two weeks, I haven't felt like I was sucking on a snot popsicle. I'm unsure why I had an increase in mucus secretions, but it was pouring out. It was all I could do to keep up. My poor caregivers were put to work scrubbing dried-on mucus from the back and front of my teeth. The effectiveness of brushing my teeth was questionable. Thus, when they freed from their prison, we got right on teeth brushing. Oh, it's the simple things! I wonder, dear reader, if you are repulsed by the more glamorous realities of ALS?

Please excuse my selfish absence from posting to my blog. I wish I could say that I've been out diligently finding a cure for ALS, or tirelessly working to fund research, or hunger-striking to bring public attention to beacon the cruelty of not having access to care facilities geared specifically to the specialized needs of the ALS patient. Alas, I have been binge-watching Scandel, The 100, and binge-listening to audiobooks. I'm currently enamored of mystery and thrillers by Chelsea Cain and Lisa Unger. I cannot do a Helluva lot these days but I can still waste time. ALS ought to have some perks. I can immerse myself in completely in entirely new situations, raise my excitement level and learn something new to me.

Do you cut toenails? Cut straight across, do not shape by clipping. This prevents ingrown toenails. This is my latest saved message, or phrase, that I stored in my Tobii. I save many messages to my augmentative and alternative communication (AAC) device, in the hope that I will remember them, and be able to retrieve at a later date, when next I need them. Trouble is, the next time I want to access this message, I must remember the exact wording I, originally, used at the time I saved it. Or at the very least, Do you cut...  Good luck with that!  Time passes and before you know it, you need someone to trim those tree climbers, again. This time your favorite, experienced caregiver is available. Obviously, you don't need to use your saved message. More time passes. Those pesky toenails grow. I may be dying...losing muscle, and my very breath, every day. Tell it to my toenails. 'Cuz they didn't get the memo. They are resplendent. Time to cut toenails, yet again. All new s...