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.

One of my nurses wishes I were more like Mrs. Potato Head, so she can gain better access to my mouth, when using the cough-assist machine....I wish I thought of that when my nose fauceted and all my caregivers were busy.

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.

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...

This is the most difficult blogpost I believe I'll ever write because it will "out" me like never before. This is a public blog; I have no illusions of secrecy or privacy. Only under the perceived protection of confidentiality, granted by various 12-step program sponsors, did I detail, share, face, and overcome the shame of my past. I was molested, repeatedly, by a male babysitter at 5 years old. I realize that I was not at fault for this, and I have gone on to use my tragedy to connect with and help to heal others. I engaged in risky behaviors from the age of 15 to 19, in the forms of underage drinking, promiscuity, marijuana, barbituates, cocaine, and LSD.  I was raped by a student doctor the night I ran away from home, at 15-years old.  I was raped by a sailor at an underage drinking party.  I cheated on my first husband, imploding my first marriage, affecting my daughter, husband, and myself, as well as our respective families, adversely. I believed, and entered...

   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...

Some days I feel like I'm nothing more than a snot-mouthed, shit-bottom monster.

First atropine, now glycopyrrolate. New medication is affecting my eyesight Preventing me from using my tobii. More recently, I vomited a volume of gluey mucus. My caregivers, default to rolling me onto my back, placing me in the vulnerable position of aspirating whatever flows up my throat. This time it was vomitus.

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...

Contrary to popular belief, I do not save up my gas to sadistically torture my caregivers. I smile when I break wind because I always have. Like any eight-year-old boy, and some little girls, I find bodily functions hilarious. My family was so poor, that our main source of entertainment was each other. When you eat commodities, you get powdered eggs, powdered milk, and a humongous chunk of fart-producing, fake cheese. A quiet night in front of the tube, was, invariably, interrupted by an SBD, or a ripper. What is an SBD? An insidious noxious cloud that explodes inside the nostrils, inspiring either retreat or battle stations. Within our family, it was battle or die. You may be thinking that this was a mere pastime among siblings; you would be wrong to exclude the parental units. Dad was a sneak attacker, waiting until us kids were mesmermized by a television show... Rrrrrrrip! We'd get an aromatic flutterblast right at eye level. Mom wasn't quite so disgusting but neither...

I miss the days when... I could, physically, use my ipad rewind and fast forward, all by myself.

I continue hemorrhaging people. Stephanie, my Stephanie, has given notice of her intention to end her employment. Thankfully, she gave me notice as well. Tears were shed. I totally get that she must do the right thing for her life. Her Baby Girl deserves to have her mama at home on holidays. I will miss the love and her art on the graduated pitchers. I'm not gonna lie, it's hard to lose good people. People who are there, the ones that actually care. The ones who hug and kiss me (with permission) when I cry. The ones I laugh uproariously with; the ones who tell me off-color jokes and don't mind their language. Seems like only yesterday that I lost Meredith to Magic Mike, marriage, and the midwest, nevermore to hear her sound effects while rolling me over in bed. Lisa also went home to the midwest. Don't they understand snow and tornados?! At least my sweet Sophie moved to California. I see much traffic and smog in her future. Man, she's gonna be a great nurse. ...

I think ALS is what one gets when one prays for patience. I don't actually recall praying for patience, but I thought about praying for patience. That must have counted. I number among that neurotic bunch of people who believe we have a daily reprieve on our alcoholism, based upon our spiritual condition. Indeed, I've logged over twenty years sober and clean. I like to say that I learned how to pray in my 12-step program, but that is not completely accurate. I learned how to pray as a child in that rout manner:  God is great. God is good. Let us thank Him for our food. Amen. I also learned to say nighttime prayers: God bless mommy and daddy, and Grandma and Grandpa... My foray into Born Again Christianity, in my teens, left me feeling like a fraud upon my return home to a more hedonistic household.  Therefore, I credit my 12-step program with teaching me the nuts and bolts of praying right. Thanking God for all the blessings in my life. Not giving Him my laundry list o...

Flop goes my head, muscles have given up the ghost in the left side of my neck. Another day in the life of the ALS patient. I'm not sniveling so much as documenting for posterity. Losing my neck muscles is problematic in the sense that it's difficult for caregivers to place my head properly.  Additionally, caregivers operate on old information; they don't really get the progressive nature of my disease. Consequently, my head doesn't get properly supported. I'm struggling with my toes curling as my tendons contract, my muscles have died. It was so much better when my husband curled my toes! I may have to resort to wearing glamorous moon boots lined in genuine simulated sheepskin.  I spend 99% of my time lying or laying in bed. As a result, the skin at my heels is getting sensitive to pressure and my left knee and thigh are in near constant spasm. Both conditions are painful. It's winter in the Pacific Northwest of the United States, with winter comes dry ...

Patriots win Super Bowl LI (That is 51 in Roman numerals, Jack!) You can get that 4-1-1 on your twitter feed, FaceBook, Yahoo, television, radio, your Uncle Gary, that obnoxious Patriots fan in the next cubicle, etc. Some people judge the Patriots on star quarterback, Tom Brady, and the whole Deflategate scandal. Who can blame them? I don't want to rehash that debacle in this forum. Where do I weigh in? Suffice it to say, I was rooting for Atlanta. My husband, on the other hand, was rooting for the Patriots, despite making digs about deflating footballs, when New England played abysmally the first three quarters. Neither of us could believe the cred-saving comeback of the Patriots in the fourth quarter!  They actually tied up the game! The first tie game in Super Bowl history and I witnessed it, in the comfort of my hospice room, with my loyal football-loving husband. Worse, I watched the Patriots win Super Bowl LI, when they took the sudden death contest when they scored a...

Things that make me giggle... Caregivers who enter my room exclaiming "It smells great in here! " when I've just filled my pants.

I always brightened when I saw you walking into my room. I had faith in your abilities as a nurse. But your smile and midwest, down home, make no apologies wit was a balm to my soul. You are my cat soul sister. I'll never forget your "crack kitty" drawings on my daily graduated pitcher. And the outlandish tales you spun. You brought me a little piece of home with your cat stories of "Diaper",  I felt like I knew him. Thank you for sharing your engagement with me. I could picture you climbing that ladder to find the suitcase, your expectation of finding WWF wrestling tickets was hysterical! I loved it and I love you! I'm grateful for the time I had with you. I hope the midwest treats you well. Have a great wedding and a better marriage! I wish I had met you when I was healthy. Cheers!

I am so frustrated with you. I need to breathe; I cannot breathe when I'm flat on my back. I cannot breathe well without support under my arms when I'm sitting up. You have to learn  how to do my changing routine without prompting from me. I beg you to help me to breathe. I do not hate you and I do not think you are an asshole. I just cannot bear up under the stress of fighting for air.

It happens all the time, I'm wary of sometime and on-call  staffers. They  "think" they know how to care for me. They do not. Even though I'm reassured by the full-time staffer that they will help them.They do not. So I am being changed, Turning me over onto my side, the on-call nurse doesn't turn me using my hip and shoulder, instead she rests her right hand onto my flank and ribcage. Due to dysarthria, I've lost the ability to speak consonants and rely on caregivers to learn the few words available to me if I'm without my speech generation device (SGD). I tell her "Off" and she takes her hands completely off of me and uses her body to block me from rolling off the bed. The other caregiver doesn't correct her for either move which impedes my ability to breathe. With ALS, I'm losing muscles daily, as this occurs, others take over. I used to have muscles that lifted my chest, allowing me to breathe, now my belly and neck help me. I...

I cannot stress this enough... If I do not want you to touch me, by God, don't touch me. I must be allowed ultimate dominion over my own body.

ALS blesses me with myriad muscle spasms; some playfully jiggle a given body part, others painfully seize and wrench. In the early days, I was the recipient of more than one spontaneous orgasm, when my clitoris was jiggled. Regrettably, those freebies were shortlived and few in number. They were, by far, the most pleasurable and the most memorable. Most often, my fasciculations, the technical medical terminology for these muscle spasms, range from unnoticeable to annoying to painful. Luckily, for me, the painful ones are short in duration, but they can be quite acute. For example, charlie horses, or muscle cramps in the legs, are intense and used to awaken me screaming.Now they are de rigueur. Since I, literally, cannot move a muscle voluntarily, I can only breathe through the pain. Another troublesome spasm hits me deep inside my left ear, it's what I imagine, a red, hot poker feels like being plunged into your ear. Yes, I actually get the sensation of extreme heat to enhance ...

23 I'm so very weak today. I can barely keep my eyes open. I awoke to find my husband napping in the spare bed in my room. A nice surprise.But I struggled out of sleep stupor at the

I have been violated. Again. My trust betrayed. Again. This time, I was in the shower, talk about vulnerable! I have late-stage ALS, if I may borrow the terminology. ALS is not measured in stages, to my knowledge, and I've made it my business to learn all things ALS, for the past four years. ALS has taken away virtually everything a person can do, and almost everything I am. I'm quadriplegic. And I've lost the ability to speak. The greatest loss has to be speech. Because even though I have the best available speech generation device, which allows me to use my eyes to type, I no longer have the energy to get my point across to caregivers in time to do any good. I even lack the energy to communicate with the management to report abuse. Back to the shower incident. I'm so happy to be getting a shower. I figure I'm going to get a good one because one caregiver was a former shower aide, and she has showered me before. Furthermore, she is going to teach another how ...

What a difference good caregiving makes! I'm not energy-drained, over-taxed, nor overwrought. I'm not injured, not under-medicated, I haven't been talked down to. Good caregiving makes me glad to be alive. I want to be alive. I should not have to fight my caregivers.

I am an undesirable. I have ALS. I take up way too much caregiving time. Oh, doubtless the caregiving industry wants the dollars we generate to fill their coffers, but we are a losing proposition. I've been in two managed care facilities now, and I can tell you stories of overpromising and underdelivering. Mismanaging, getting lost in the system, ignored call bells, not bothering to learn the disease process, and critical think solutions, train carestaff to the deficits. More than half the staff of this well-rated skilled nursing facility, could not verbalize what ALS is, I venture to say. And they are the best thing going for the ALS patient. I've been in residence for two years now, and the caregivers that attend me day in and day out, do not grasp the concept that I am safer, from a breathing standpoint, rolled up on either side, rather than be positioned flat on my back, where I'm subjected to the weight of gravity pushing down on my chest. For the first year, thi...

If my caregiver doesn't know how to react to a slight choking incident, I refuse to allow them to feed me. If you had a DNR Do Not Resuscitate order attached to your name, Wouldn't you? Furthermore, if you have a choking incident, the Powers That Be are eager to downgrade your diet. Yeesh! Does slurry sound good to you? (Involuntary shudder) If a caregiver doesn't know how to properly turn me, clean, or transfer me without obstructing my breathing or endangering me in some way, Why would I allow them to help me? It's my life that I'm PROTECTING. I want to live.  I dismiss a lot of caregivers from my room! A Helluva lot.  Nurses and caregivers, alike, must be able to communicate with me. I have a major speech issue, therefore, they should be able to work a rudimentary alphanumeric communication board or setup my communication device, or have a basic understanding of how it works. And yet, this is a major lack. A major lack and the root cause of all the safety iss...

As a kid, I loved riding in the car, especially long trips; roadtrips with my grandparents were the best. On these trips, one was sure to encounter big rigs, coated in road grime, with Wash Me written with an jokester's fingertip. I am the big rig. I'm miserable, again, and not because ALS.  It's because I'm in a managed care facility. You could say that the scrutiny is on other things, not on whether or not I get bathed. In a nutshell, I'm dirty. My skin itches and hurts. My scalp itches, burns, and hurts. I'm supposed to get bathed three times per week, and I used to. But with the last major staff turnover, the habit, abruptly, ceased. I don't understand. I wear adult diapers and take daily bowel medications; thus I have an added need for cleaning. And I sweat. But, somehow, for some reason, I am no longer a priority. I'm an option. They do not understand the personal cost to me when I do not get a bath or shower. I'm certain that if the sear...

I've been browsing my own blogposts to see what I was up to back in the early days of my blog.  What I noted most was my use of photos. Unfortunately, I am unable to take new photographs, but I can access the ones loaded in my Tobii. This picture of a dove perched atop a very old adobe wall, was taken in Oceanside, California at a mission.  The Old Mission San Luis Rey de Francia, built in 1798, otherwise known as the King of the Missions. This beautifully weathered wall, located south of the mission, in the Lavandaria. I've been particularly proud of the peaceful, warm nature of this photograph.