IntrinsicTina

I struggle. In many ways, I struggle. I struggle to be heard--to be understood as the muscles atrophy in my mouth, tongue, and throat, such is the reality of dysphagia. I struggle to move food from one side to the other within the confines of my mouth. I struggle to chew, to swallow, to nourish my body in a natural manner. I struggle to keep positive in the face of the losing battle that is ALS at this point in time. I struggle to graciously accept the fact that the majority of my friends and family don't understand this disease and keep their distance from me. I struggle to be kind to caregivers who don't know how to care for me -nor follow my care plan. I struggle to stay awake during the day. I struggle to be patient when I get yet another person unfamiliar with my eating/feeding routine. I struggle to pray and meditate each day. I struggle to dream up topics for my blog. I struggle to keep out of regret, remorse, and resentments. I struggle with decisions I've mad...

So fortunate today, Ethiopian food with a BFF and my husband to feed me.   I was first introduced to Ethiopian food twenty years ago by my friend, Rita, and her husband (at the time), Darryl. My experience with Ethiopia, or it's people, was zero--unless you count images of emaciated, starving people, including listless babies with swollen bellies, on news programs when I was young. "What could they possibly eat besides the rice that humanitarian groups donated?!", I thought. How ignorant I was! They withheld the details, saying only that we would be eating with our hands. "What the...?" Walking through the door, I couldn't even begin to relate the scent that wafted out the door. It was utterly foreign to me--not unpleasant, just not an aroma I associated with food. And, it was smokey, not cigarette smokey, something coffee-ish and dusky spicy in fragrance. Soccer was on the television and a few men, evidently family members, drank coffee at the tiny ba...

Today is my birthday--another milestone met--another year of birth anniversary. I didn't expect much of a celebration this year and that was fine by me. I tire easily and can't bear up under the social expectations of others. Smiles and efforts to speak, with or without my speech generating device, taxes my energy--quickly. After a lifetime of acquiring stuff, I need nothing anymore; you cannot take it with you and I live in hospice where I live my life in a room. I'm pretty happy to have a delicious morsel that I can manage to eat despite my mouth, tongue, and throat weaknesses. Tonight was delectable and tender Lamb Curry, individual-size banana splits, chocolate mousse, and cupcakes. My mother and sister, Renee, surprised me with a visit complete with gorgeous fall flowers, gourmet cupcakes, a gift of audiobooks (my favorite kind) and their time, despite health challenges. My husband showed up while they were here, helping to carry the conversation, thus I did not ov...

I keep discovering that my best caregivers have left. Just about the time I am comfortable with people -- I discover they are leaving, or worse, they've moved on without saying good-bye. Please note: I detest being denied closure!  I understand that people have a right to move on or move up -- it's hardly a stretch to imagine a gifted, intuitive patient care technician (PCT) may want to strive for more, going back to school to become a nurse or a nurse that wants a more lucrative or challenging position. I do not begrudge them, I applaud their ambition. Not that long ago, I shared that ambition -- after all, I earned my college degree in accounting in 2005 facilitating a career change from administrative assisting. However, a part of me, selfishly wishes they'd confide in me, share their plans for the future, be sure to say good-bye when they leave. My emotions do not differentiate between family, friends, caregivers these days. I get emotionally attached to those who a...

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...

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 ...