IntrinsicTina

1 Momentarily sad, and at the extreme risk, of being repetitive, I am frustrated. Why? Let me just state my sincere appreciation for having access to an AAC device, also known as a speech generation device. Without it, I would be trapped in a heinous episode of Twilight Zone or Black Mirror, having a lot to say and not be able to say anything. And in this day and age of technological "miracles". Heinous. I am one of the fortunate ones, whose insurance covered my device, with my diagnosis. I have A.L.S., also known as amyotrophic lateral sclerosis, or Lou Gehrig's Disease. It's a terminal illness, but before it kills us, it robs us of everything we have and everything we are. The ability to walk, raise our hands, dress and feed ourselves, talk, gesture, and, ultimately, breathe. But I'm here to discuss the ability to discuss, to voice an opinion, to rise up "as it were" and be counted.  I am a fully cognizant individual, informed, college-educated, an...

♫ Ten, ten, ten, ten, let's sing a song of ten. How many is ten? ♫ Like, literally, millions of kids, I grew up watching  Sesame Street and The Electric Company. I watched those programs well into my teens since I was the eldest of four kids. Longer if you factor in seven year gap between the middle children. Of course, I introduced my daughter to my old pals. Is it any wonder that I naturally think of ditties when I hear numerals from one through ten!? Anyway, this is the next verse of Tina's Twelve Days of Christmas...  ♫♫On the tenth day of Christmas, my true love gave to me...Ten Snowman bright lights, nine Fran's dark chocolates, eight Christmas crackers, seven cotton candies, six bags of kisses, five red heart ornaments, four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. ♫♫  We are getting ever nearer to the end of the song. Wonder what that husband of mine, has planned for the finale? 

Pleased to report a good save and measurably improved response to suctioning needs. As usual, adult diaper change spurred secretion movement; I was surprised when the patient care technician (PCT) Calmly asked me if I needed suctioning. Upon my ascent, she told the other PCT to pull the emergency cord, and turned on the suction machine. She even did a decent job removing most of the secretions. The charge nurse promptly responded to the call, backing up and taking control of the suction wand.  If I may, my only critique is that this particular nurse is the only critical thinker who considered gravity when suctioning. I was rolled onto my left side, thus the secretions were pooled in my left cheek, not the back of my throat.

Talking to a caregiver the other day, she mentioned that she "hates Facebook because it's so fake." I've heard the same charge made about funerals and memorials. I have a different point of view. Look closely at a tree; not very attractive if is has a big ole burl blemishing the appearance. What about broken branches from the last storm? And the gaping hole, former home of birds, current home for squirrels. What a flaw! N.ow that I think about it, it's not symmetrical. Hardly a perfect specimen with bugs burrowing into the bark and vermin running about, up and down the trunk. Yikes! Now step away from that tree, see it with fresh eyes. You see it more generally; it's a tree, home to birds and squirrels, a food source for woodland creatures, a focal or backdrop for the nature photographer. Perhaps it gets harvested, becomes furniture or lumber to build a home. And that ugly burl? Goes to the craftsman to become stunning art. Maybe it falls to the woodsman...

I spend my days in solitary trivial pursuits and in slumber. Listening to audiobooks, contributing to websites like patientslikeme and goodreads, blogging, reading the Daily Reflection on the Alcoholics Anonymous website. I have a Word of the Day delivered to my email from Dictionary.Com. Despite my impending demise, I'm intensely interested in learning. Classics, mystery, paranormal romance, are my preferred genres. But I've ended up reading non-fiction, biographies, true crime, and climbing books. On Good Reads, I document the books I've read, rating and reviewing them, and sharing these on Facebook. Oh yeah!  I forgot. I spend time on Facebook, communicating with family and friends and subscribing to pages centered around PALS communicating with PALS. This ended up being one of my main means of communication. On Patients Like Me, I document my ALS progression, my moods, and communicate with other persons with ALS (PALS) from all over the world. Note: ALS is also kn...

I said it before and I'll say it again, I Have more fun with my daughter even when we do, not much. I never left my room, and yet, we covered a lot of ground. She transferred photos into my photo frames (a project backburnered for a month), ordered my eyeglasses online (backburnered 3 months), and sent out a customized Facebook campaign notice for the upcoming ALS Walk for a Cure. All while we visited and enjoyed each others company. Anyway, I enjoyed her company while I got to hear her stories of her life with her boyfriend and my grand dog. Apparently, my grand dog rides on their paddle boards and goes crazy barking whenever faced with sea lions and much to their horror, he jumps into the bay to attack. He's oblivious to his disadvantage with his diminutive size. They could gobble him down quick. Yeah,  I still have a grand dog, no grandchild, yet. .Also, good news!  My sister, Dawn, the one I keep at arms length, has a second chance at family life. Her daughter that she...

Tuesday is shaping up to be my best day of the week. Every day holds the requisite eating, changing, television, and napping. But Tuesday, I got a glorious, hot bath in a handicap-accessible bathtub with my Angela and Lisa, reorganized my shower caddy with my Lisa, read "The White Album" by Joan Didion with my Lindsey, "supervised" doughnut-making and sampled same with my Sandra among others, and listened to Ryan Feng play classical piano. A new book fell into my lap today. Of course, I mean that figuratively. "Play It As It Lays" by Joan Didion was just laying on top of the informal Bailey Boushay House library cart, so I borrowed it. .Guess what we'll be reading? I feel very blessed!

1 Wow! Spot on...In so many ways.  Granted I wasn't in the the same socio-economic circumstance, and neither do I play piano but I was passionate about knitting and I lost the ability to engage in my passion practically from the onset of the ALS. Symptoms first manifested in my right hand as well. I was big on juicing, supplements, and did not worry about fats nor calories. But ALS advanced relentlessly. I hired friends as caregivers and had to bear the humiliation of being toileted by them.One of the worst hurdles for me was allowing a long time male friend wipe me following a toilet. My mother, stepfather, and sister all toileted me as well. Of course, my husband had to attend to all of my most delicate needs, showering, dressing and make-up application. I could really relate to Hillary Swank's character, Kate, in all circumstances except, she chose not to use the bipap (breathing apparatus).  I don't really get why somebody would opt out of a non-invasive solution to...

First ever episode of CSI: Cyber! So excited to see this new addition to the CSI franchise. I wasn't that crazy to hear that Patricia Arquette was playing the lead role but so far, so good. Action packed and revolving around computer-related crime. Add in decent characters and I predict I have a new Wednesday night activity. Woo-hoo!

Grand Budapest Hotel, Selma, Interstellar, Boyhood, Whiplash, The Imitation Game, American Sniper...Have I missed any movies to see? I saw Birdman and thought I didn't like it but there were memorable parts I was glad to see. Edward Norton naked and Emma Stone channeling Lindsey Lohan. The Theory of Everything was just beautiful and I may be a bit biased since I share MND or ALS. Wow! Eddie Redmayne won the Best Actor Oscar and he dedicated it to us!! Oh, Still Alice! I must see this! Julianne Moore is awesome. Check it out, she wins Best Actress in a Leading Role! I must admit that I was pulling for Felicity Jones. Best Picture winner is Birdman. Bummer! Oh well, so much for my Oscar prediction skills. I was pulling for The Theory of Everything. Yeah, I had a theme going. Our home hosted an Oscar party with a "red carpet" and photo moments and sparkling cider in flutes. It was an opportunity to dress nice. I wore my red drape blouse and pearls. 

As I've mentioned before, I watch a lot more television these days being confined. But my viewing choices have changed dramatically since losing my mobility and Independence. I spend hours on Discovery and I've gotten fond Alaska: The Last Frontier, Alaskan State Troopers, Gold Rush, Moonshiners, Weed Country, Dude, You're Screwed!, Dual Survival, Deadliest Catch, and the like. I also love the Weather Channel where I watch Weird Weather, Prospectors, Why Planes Crash and Highway Through Hell. Formerly, I strove to see design shows and HGTV was a personal fave where I absorbed Income Property, Property Brothers, Love It or List It, and Color Splash. Network television series' like The Good Wife, Private Practice, and Gray's Anatomy were my guilty pleasures. Of course, I had to view the various cop shows ; CSI, CSI: Miami, CSI: New York, Criminal Minds, NCIS, NCIS: L.A., Law and Order, Law and Order: Criminal Intent, Law and Order:SVU, Cold Case, Without a Trace, to...

I've been complaining profusely and whether you realize it or not, conditions are worse and, at times, better than you can imagine. My accounts of care need to reach the light of day. My brutal account of living with ALS should be known. Otherwise, how else will anyone learn how to care for us in the future? I am not a trained writer (obviously), this blog is not meant for academia, rather it is meant for me. I need an outlet to express my self, my emotions, to review my own perceptions and beliefs. I am, however, inviting you to view my world by virtue of selecting the Public button when I created this blog. I've been "cooling my heels" the University of Washington Medical Center over the past month. And I've had good and bad experiences since then. Unfortunately, I've focused on the negatives in my blog. There is a lot to love about this place, too. Forget everything you've ever heard about hospital food. The eating is good on the general menu. And...

Last night my husband and I went out on a spontaneous "date".  Following a visit to the car repair shop, we found ourselves near the movie theater and popped in to see the movie, "Jack Reacher" with Tom Cruise.  This is a real deal as these days we are much less spontaneous due to...well, you'll see.  We knew we were in new territory as this was our first visit to a theater since the ALS diagnosis.  (I use a cane to walk and cannot use the restroom on my own.)  No problem, right? Attitude adjustment for certain.  First thing in the door we are gloriously assailed with the waft of hot popcorn...Yum!  But off limits to me with my present swallowing issues.  (The kernels collect at the back of my throat until I inhale them involuntarily and choke...Yikes!)  We bypass the snack bar altogether to avoid temptation (and to conserve money). Next, I look for a "family restroom" and find none.  Yikes again. We've already spent our money and ...

I have just discovered the television series, Downtown Abbey , and I hate to admit it but it is wonderful. My newest guilty pleasure to be sure. Dreamers and schemers in both the upper and working classes. Who knew? Another guilty pleasure of mine is Doctor Who , another British television import that I absolutely love. Assuredly, they are vastly different shows... Abbey is staid, proper, and dramatic where Doctor Who is fast-paced, absurd, and fun. And now my husband has us watching Doc Martin , another television program from across the pond,that is both staid and absurd about a former surgeon who has a blood phobia.  Who knew that we'd go so gaga for these shows?!  Byproduct of turning off cable television.  Netflix streams all of these shows.