IntrinsicTina

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 ...

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 pic...

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.

♫ 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...

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 ...

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...

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...

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....

.1 I'm afraid my time is ending. My battle is soon over, with a foe who has slain so many wonderful people. I am but one of many. I'll not see my daughter marry, nor bear my grandbaby. This makes me sad. I hate to leave my husband, the love of my life.  We had such dreams, houses to finish, miles to ride, vacations to take, and love to make. Several times, I've awakened, sluggishly, locked half in, half out of a dream. Nurses have, lovingly, held my hand, while I've cried reluctant tears.

I love my husband. You are supposed to love your spouse. But I'm fortunate enough to really know that I love him through thick and thin, sickness and health. Our love has been sorely tested. Love gets tested from many directions. Fidelity, finances, and children are the biggies. And we were no different. I lost a marriage, a lifestyle, and financial security when my first marriage dissolved due to infidelity. His history bore the same scar. We both had a single daughter from our first marriages that we saw only sporadically thanks to custody battles. We were mirror images on many levels; our children, hunger for a monogamous relationship, our emotional scars, our Harley Davidson motorcycles, gainful employment...What more do we need? How about love of God and compatibility? Sobriety? About God, we both classified ourselves as believers. We weren't church attendees, nor did we belong to a congregation. If we did, we may have had some issues. But our church avoidance was an...

21 Mom and Dad popped by, surprising me, and giving me a gift of silk roses in a square, cut glass vase. Mom broke out her knitting, an aqua baby blanket, petit knits and purls in a pattern of squares. So delicate and sweet, I longed to snatch it up and nuzzle it to my face and inhale mom's floral perfume. Time sped by too quickly, they were off to celebrate Father's Day at Red Lobster. I graciously saw them off and marveled at my tears streaming down my face after they left.

Dear Renee', Rod and I keep viewing photographs on my old laptop and my heart catches when I come across photos of you and realize you're no longer going to walk through the door to paint my nails, recommend a book, or talk to me about knitting. I miss you. It's slowly coming to me that you are gone. (My grief broke)

Today is my sister's birthday. It may well be her last birthday. We should be throwing her a blow-out party...But we're not. We are unable to. She has cancer, multiple myeloma to be precise. And after three years of fighting, coping with chemo and radiation, embracing baldness, and keeping a positive attitude, she appears to be losing the war. Multiple myeloma is a tough row to hoe; it leaches calcium from the bones, weakening them. We found out about the cancer following a sudden and catastrophic spinal fracture out of the blue. One minute she's bundling groceries into our mother's house...CRACK...groceries drop to the porch. Fast forward to today, she sits in a room at the University of Washington Medical Center, recovering from water in the lungs, discovered during the administration of a new drug. She's been given 3 to 6 months to live. There it is. It's been declared. My baby sister, Renee' was wanted. My mother and stepfather wanted another baby ...

I'm so alone. My husband keeps showing me so. Today, he came to the Seattle MOHAI and never gave me the opportunity to join him. This, in itself, wouldn't be so bad, but consider this: He drove 20+ miles to go to this museum; he knew I wanted to go to that particular museum, since we missed opening hours last spring. It's located close to the hospice house I'm stowed at. We own a wheelchair van. He doesn't include me in any family events, despite close proximity, the ability to transport, and my desire to attend. He assured me that he would keep me involved in life, promising to position my hospital bed to the living room (in our home). He's off work for over ten weeks and yet, I don't ever see him before 4 pm. He wanted me to agree how well he's done, visiting me. And, yet, I rarely see the light of day, the seasons change, or breathe fresh air . This is not love. Ours, is the relationship people are grateful, they don't have. Why be angry ...

Since I've been sick with ALS, I've been blessed with angels here and there. One friend that really stuck with me is my girlfriend, Judy. We were friends before and continue to be friends. She has been my faithful friend, water aerobics buddy, (even dressing and showering me), and caregiver in the early days. I sold her my beloved Harley Davidson Softail Deluxe and was pleased that my best friend would be riding it and loving it as much as I did.  My sponsor is another faithful friend. As a result of the ALS, I've had some behavioral issues, (either frontotemporal disease or PseudoBulbar Affect), and she has never hated on me and has always gone out of her way to support me. She even wrote out another fourth step for me when I lost the ability to write and before I could operate my Tobii. Of course,  I had to voice my own people, institutions, resentments, fears, parts, defects, etc. One could say that she has shown me unconditional love and acceptance over nine years. ...

You came home, a bundle swaddled in blue, an instant pride-and-joy. Born into a family of three sisters, a novelty, the best toy ever, a living doll. You had to endure endless kisses, your feet never touching the ground, and ridiculous nicknames. You grew. You taught us that spaghetti is acceptable as a full body rub, beware of ice cream cones in an accelerating car, and McDonald's cheeseburgers are a sedative. As an adorable towhead, you were all boy in spite of being Mama's boy. Puppy dogs, worms, and bugs held magnetic appeal, and all the better to chase girl siblings. And grew. Peanut butter and mayonnaise makes a great sandwich filling, Pacman cupcakes are popular among cub scouts, and baloney sticks to the ceiling up until Mom walks through the door. Little brothers are attractive nuisances, cute as can be until one brings a boyfriend home. And grew. Farts are effective weapons, particularly in sneak attacks, and up close. If you tell Mom that she smells like ...

My husband finally had my VHS-c tapes transferred to DVD format. Oh what fun! And illuminating as well! I've been binge-watching these DVDs ever since. They contain the most precious of memories. Memories of my daughter and my first husband and me. It's obvious to me how in love with our daughter we were. Still are, speaking for me. I don't speak for my now ex-husband. What I discovered, or was able to reaffirm, was that I was a good mother and my exhusband was a good father. My mother-in-law was exceptional. Exceptionally patient, kind, and generous. This, I always knew. I don't know who I mourned more with the loss of that first marriage, my husband or my mother-in-law or sister-in-law. I loved them all so much. My daughter, I loved most of all. Still do. I also saw how much I favor my grandmother. While my immediate family are of similar mindset, I am different. Whether it be nature or nurture, I turned my back on their lifestyle and attitude. That doesn't ...