IntrinsicTina

What did you get for Christmas? Or what did you give? Unfortunately, I  did not give anything, not that I did not try. Just another unfortunate example of what I cannot do for myself, even though I have an augmentative and alternative communication device. After a Christmas morning of quiet, personal lamenting and escaping reality through sleep, my family showed up with gifts and laughter.  Precisely what I needed to lift my flagging spirits. My sister, my surviving sister, the one who, allegedly, doesn't cook, cooked a whole Christmas dinner. My family invited my husband for the Christmas dinner and he brought my mom and dad out to their place in Puyallup. Part of me was jealous that I wasn't even given the opportunity to participate, but a bigger part of me was grateful. I was grateful for the knowledge that my family has fully enfolded my husband into the family, and he won't be alone after I'm gone. I also benefited from her Christmas dinner preparation, the

Tina's Twelve Days of Christmas (full version) ♫ On the first day of Christmas, my true love gave to me...a glass pickle to hang in the tree. ♩  On the second day of Christmas, my true love gave to me...Two red poinsettias, and a glass pickle to hang in the tree. ♩  On the third day of Christmas, my true love gave to me...Three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. ♩  On the fourth day of Christmas, my true love gave to me...Four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. ♩  On the fifth day of Christmas, my true love gave to me...Five red heart ornaments, four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. ♩  On the sixth day of Christmas, my true love gave to me...Six bags of kisses, five red heart ornaments, four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to h

Getting right to it, Tina's Twelve Days of Christmas nears it's crescendo:  ♫ On the eleventh day of Christmas, my true love gave to me... eleven Trophy Cupcakes, 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. ♫ I have to share with you, the effort my husband is making. He brought me a few different choices for the eleventh day of Christmas: Eleven candy canes, eleven Lindor truffles, and eleven Trophy Cupcakes. Of course, I cannot possibly eat all of the nummy goodies, so my caregivers are, deservedly, getting tasty holiday treats.

24 24 24 My favorite Christmas took place in West Yellowstone, Montana. My husband and I took my daughter to snowmobile Yellowstone National Park. Sixteen, curly, honey-blonde, lightly-blemished, a new driver, full of the cockiness of youth, exuding the air of boredom that only a teenager exhibits when confronted with unfamiliar circumstances. We procured a room upon arrival, the Best Western, abandoning our habit of driving into the night, and sleeping in the car, in a bear-threatened campground. We walked the tiny town, amid parka, polar fleece, wool, and boot-wearing tourists, browsing souvenir shops and dodging sports utility vehicles towing personal snow machines, mobbing the ranger station for tour permits. Snowmobile Rentals, flurry of trying on snowsuits, gloves, and boots, Should we buy balaclavas? Let's get this party started! We depart with a guide, my husband on one machine, myself and my daughter on another, six other snow machines in our caravan, You are entering

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? 

23 The ninth day of Christmas, and I'm peaved. I was so excited to see a Fran's Chocolates bag, and so disappointed to find out that five out of nine were dark. I don't like dark chocolate! I know, I know, I'm terribly ungrateful, and I'm not proud of myself. On the contrary, I'm ashamed of my attitude. I fully understand that I am not owed anything. I know full well the consequences of ingratitude. I am lucky that my husband visits me as much as he does, much less brings me gifts, tacky or not. And still, I was powerless to stop my train wreck to crazy town. Nevermind, that I am worn out by well-meaning caregivers. Some days one after the other, for everything I must do in a day. By the time he shows up, I'm done with patience, tolerance, and kindness. If I ever ever even woke up with any... Oh, admit it, nobody always awakens joyful and happy. I woke up happy then I had a bad hair moment. Here is the most recent installment of Tina's Twelve Day o

Got a chance to let my party goblin peek out a little at Bailey Boushay House, in Seattle, Washington. God, I love these parties!!! They are a real boost to my spirit. Day in and day out, I am in my room, pleasant as it is, I get starved for new understanding peeps to interact with. Additionally, I need new foods to pass over my bored palate. (Sorry, Daniel, as good as your food is, I am not accustomed to the limits set by institutional standards, for my level of dysphagia.) Thanks to Chef Daniel, I got a chance to sink my teeth into...wait for it...Beef Wellington, Stuffing, Sourdough Bread, Caprese Chicken, Cranberry Pear salad, and Broccolini. Following a fantastic meal, Chocolate Lava Cake accompanied by thick, rich, and creamy Egg Nog. How do I convey the deliciousness? My eyes rolled back and my taste buds practically sang. Mmmmmmmmmmmmm. ♪ Tis the season to be jolly, ate my fill, plus cake by golly. Fa-la-la-la-la-la-la-la-la-la ♪♪ Not only did we dine, we got to listen to

...On the eighth day of Christmas, my true love gave to me... eight Christmas crackers , seven cotton candies, six bags of kisses, five red heart orns, four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree.  What the devil is a Christmas cracker?! That is my question. They look like brightly-colored, wrapped candies but they are not. I hope they are not firecrackers; I hate firecrackers. Oh well, they look beautiful, bright, and shiny.

Yes, it is the eleventh of December, as a matter of fact, however Hot Rod, my husband, has just gotten to the seventh day of Christmas. What's more, is that I'm amassing quite the cache of candy, more than I can eat or store. Sad news, huh? Don't cry for me! I can share and I have. Tina's Twelve Days of Christmas  On the first day of Christmas, my true love gave to me...A glass pickle to hang in the tree.  On the second day of Christmas, my true love gave to me...Two red poinsettias, and a glass pickle to hang in the tree. On the third day of Christmas, my true love gave to me...Three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. On the fourth day of Christmas, my true love gave to me...Four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. On the fifth day of Christmas, my true love gave to me...Five red heart orns, four rein-dogs poopin', three chocolate Santas, two red

24 I have a dear friend heading out to Maui for the first time next week. Since I've been there before (4 times), I've got a few suggestions of things to do and eats. Note: I've always been budget minded but I have always, always, always had fun! First, I have always rented a car; Getting from the airport to the hotels, beaches, and tourist areas requires travel. Plus, the road to Hana must be driven and takes a full day. The road to Hana is challenging, pack your patience and FOOD, opt for full insurance on your rental car, and leave early!!! Worthwhile for photo opportunities. Do not even consider the shortcut, it is not worth the risk of death or stranding. Stop early along the way for the best banana bread of your life. Anywhere, but especially at Aunt Sandy's on the Ke'anae Peninsula. Buy Fruit at the fruit stands along the way. Bananas are amazing, try to locate a fuzzy red fruit called Rambutan, for a unique taste treat. Check out http://www.mauiinformation

2 Back to the important things in life, fun and presents. On the sixth day of Christmas... What do mean it's not the sixth? Oh yeah, we are giving my husband a mulligan. He thought it was a good idea to give his true love, six slices of white bread. 😼 Yes, I know, I know I married him. That is just the way he rolls. As he said, I'm just a dumb tinner and YOU married me! I remember marrying a sexy cowboy-type who rode a sexy, black, iron horse. I guess we know where my head was at. On with Tina's Twelve Days of Christmas...  On the first day of Christmas, my true love gave to me...a glass pickle to hang in the tree.  On the second day of Christmas, my true love gave to me...Two red poinsettias, and a glass pickle to hang in the tree. On the third day of Christmas, my true love gave to me...Three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. On the fourth day of Christmas, my true love gave to me...Four rein-dogs poopin', three choc

Pleasantly surprised today, a nurse relayed a message from the Director of Nursing, a change is coming. The other night, a patient care technician (PCT) sprayed a heavy duty air freshener down the hallway...nearly suffocating me. Unfortunately, it was not the first time. I have ALS, amyotrophic lateral  sclerosis, a neurological degenerative disease which has progressed far enough that it has impacted my breathing. Furthermore, I am a quadriplegic, meaning all four of my limbs are paralyzed, and unable to speak intelligibly. I live in a skilled nursing facility, also known as a sniff (SNF). I rely 100% on caregivers to attend to my every need. Imagine my dilemma, I have approximately 10% Forced vital capacity (FVC), Meaning that is all the air that I can breathe, compared to the 110% that I started with. Now, I'm contending with toxic pollutants invading my hospice room. Insult to injury, I cannot escape nor can I tell anybody to close the door and open a window. I'm desper

It's beginning to look a lot like Christmas, every where I go.... And these days I usually go in my room. I got my favorite Christmas minion to decorate a bright spot, or two, in my room. My in-room artwork, provided by Bailey Boushay House, sports battery-operated, white, micro-lights and my glass pickle, thanks to my minion. And, I have my tiny Christmas tree, prominently displayed on the countertop, right at my eyeline. To my left is the end table with my two poinsettias, my chocolate Santa suckers, Jelly Belly-poopin' rein-dogs, my Seahawks "12" Snowman (from my bestie, Rita), and my emperor penguin. My favorite minion, a.k.a.Flhrod@comcast.net, a.k.a. Hot Rod, a.k.a. Rodney, also known as my husband, brought me another gift of five christmas tree ornaments. Thus, continuing the saga of Tina's Twelve Days of Christmas.  On the first day of Christmas, my true love gave to me...A glass pickle to hang in the tree. On the second day of Christmas, my true lov

My husband took my mom and dad to the airport early Saturday morning.  What a good son-in-law he is! He even asked my dad if he put anti-freeze in his car. He did not and there's snow in the forecast! Whut whoa! My husband took the initiative and put in anti-freeze. I forgot to mention that they are on their way to Maui. I guess Dad had his mind on other things... My husband had plans to ride his Harley to the Toy Run in Olympia. However, he forgot to do his homework and find out exactly where the event was. He rolled into the Black Lake area of Olympia and no Toy Run. I find this hilarious! Why? He owns a smart phone, and is such a luddite, he did not bother using his phone to get the location. Typical Rodney. Oh well, I guess we know why I got a big, stuffed, Emperor Penguin. Rodney did bring me another installment of Tina's Twelve Days of Christmas. He found the cutest, little, novelty reindeer, actually the reindog creation from The Grinch Who Stole Christmas. The Nove

First and foremost, it is important to know exactly what to do to keep me safe. Bring a cupful of water and a toothette (swab) to the food table. This can be used to moisten my mouth, to move food from the roof of my mouth or to remove food.  Be prepared to call for additional help from nursing in the event of a choking incident. Pull the call light cord from the wall.  Make certain patient is upright. For me, 90-degrees is unsafe for respiration.  Temperature check. Touch food to patient's bottom lip whenever presented with hot, fresh food.   Spicy factor. Spicy or overly sour foods can produce excessive saliva. No thin liquids by mouth. Jello turns into a thin liquid. No mixed textures. Soups are the usual suspects. Small bites.  No multiples. Loading the spoon or fork with small pieces of food creates a hazard. I can't track.  No flat pieces. Sliced cheeses, meats, pickles, etc. Can't track within my mouth.  Use gravies, sauces, and condiments to bind food t

Another verse for my Tina's Twelve Days of Christmas 'and a new name, for my husband's sake. He has an aversion for acknowledging the inevitable, the impending end to me. That's kind of gratifying. He loves me. He found my twist on the old standard amusing and is taking up the challenge to bring the song to life. I love it! And I love him! On the first day of Christmas, my true love gave to me...a glass pickle to hang in the tree. On the second day of Christmas, my true love gave to me...Two red poinsettias and a glass pickle to hang in the tree. On the third day of Christmas, my true love gave to me... Three chocolate santas, two red poinsettias, and a glass pickle to hang in the tree.

My husband has been bringing touches of Christmas cheer to my hospice room. Thus far I've received two red poinsettias and a glass pickle to hang in the tree. Oh no! That could be the start of whole new version of  The Twelve Days of Christmas. We can call it The Dying Woman's Twelve Days of Christmas or something in that vein. On the first day of Christmas, my true love gave to me...A glass pickle to hang in the tree. On the second day of Christmas, my true love gave to me two red poinsettias and a glass pickle to hang in the tree. Sing it! Feel free make suggestions for additional verses....