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

Nineteen years sober today. My husband bought me a beautiful coin commemorating my time free from alcohol and drugs, one of our family traditions. Some of my fellows will be bringing me a meeting and a cake at the end of the month to celebrate. So grateful for that.

Picture perfect weather on the banks of Lake Washington, the #2015WalktoDefeatALS was a wonderful event for walkers, drivers, riders, and volunteers. What wasn't to love?! Family, friends, young, old, smiles, hugs, kisses, dogs-on-the-leash. The happy hub-bub of greeting, check-in, t-shirt pick-up, assemblage, live music, a rousing speech by one of our own, team photos, selfies, and departure group by bouyant group. We raise awareness, money, and our spirits. Today we are one in our cause. Today we are not alone in our disease. Today we have hope. Today we matter. I'm so appreciative of my family, my friends, and the surprises I received when my mother showed up as well as my former coworker. Even my sister who's been fighting multiple myeloma showed up in a wheelchair to support me. My mother also showed up in a wheelchair. This is a BIG deal! My daughter traveled from SoCal to walk in this event. My husband's family showed up to walk again this year, his brother and

In keeping with the solemnity of the day, 9/11, I'm going to chronicle my progression with ALS, my personal 9/11. September 11, 2012, three years ago today, I was diagnosed with ALS. I'm not special or remarkable in any way, I am average.  I'm not a celebrity, sports hero, astrophysicist, best-selling author, doctor, lawyer, nor anybody of note. I am a wife, a mother, an aunt, a niece, a sister, a daughter, grand-dog grandma, and a friend. I was an employee, an accountant, a late-in-life college graduate, an adventurer, a Harley rider, a photographer, a knitter, a crafter, a writer, a hack, a house-painter, a gardener, amateur birder, a hiker, a cook, a traveler, a lawnmower, a pet parent, a dancer, a foodie, a Starbuck's enthusiast, and a gadget geek.  My ALS diagnosis was a complete and utter shock. Though I struggled to not allow ALS to change my life, ultimately, it changed everything. At this point in time, ALS always wins though we fight the valiant fight. Alt

After catching up another PALS blog, it put me of a mind to do what I learned in the recovery community, make a gratitude list. While I've had to endure losing practically everything I've worked for and who I am, I've got a lot to be grateful for. I've been abandoned by my husband, pigeon-holed in a nursing home, and virtually left for dead by family and "friends" but I still have much to thank my lucky stars for. I live in the best facility in the state of Washington for people with ALS. While it's not exclusive to ALS sufferers, it is a place that has the best resources available for our unique and rare disease. My room has a built-in lift (EWC), fresh paint with low VOC, linoleum devoid of stains and rips, a large sunny window, original artwork, tech-saavy appliances, namely a flat screen television with a Blu-Ray Player that is operable by my Tobii speech generating device (SGD). Yeah, I own my SGD! I'm extremely grateful to be able to communic

I've been disgruntled, as of late, but I cannot tell you the hope I get from getting a bath or a shower. The simple act of washing my hair, a minty refreshing lather gently scrubbing my stress and worries away. Delicious! And using an ephemeral fragrance transports me to a different place and time despite having to submit to the vulnerability of allowing caregivers clean me. When I get my favorite caregiver, my shower is perfection: feet soaking in a basin of hot water; scalp scrubbed and tingling; warm water sprinkling like rain keeping me comfortable and free from body-wracking shivers; My paralyzed body practically draped over the shower chair; soft towels wicking the moisture from my body maintaining body heat. Baths are even better as the moist heat radiates into my muscles and joints. The bouyancy is Heavenly.

Sometimes I'm ungrateful and sick-to-death of being a cog-in-the-wheel hospice resident. Most days I'm grateful to God, the caregivers, and the system that I have good care since becoming paralyzed by ALS. Caregivers tend to my every single activity of daily living; dressing, eating, toileting, rolling over, wiping my nose, you-name-it. If my door is open, volunteers try to entertain me; some activities I participate in, others I avoid. As in any life, each day brings myriad variations of daily minutae. In the course of receiving medications through my P.E.G. tube, I get interrupted from activities, my private space gets invaded (my "PEG" is positioned right between my breasts). Invariably, I get medications dripped, splashed, and dumped on me. Worse, I can't speak intelligibly which leaves me wet and sticky often Since nurses don't seem to notice. Breif changes, many times a day, are usually fraught with annoyances.  During the day there is normally eno

Fed up. Sick of hearing, "I'm sorry."  Apologies don't erase the pain you inflict on me. You pull my pubic hair. Your nitrile gloves pull the hair from my head. Not once in a while but day in and day out. You turn me in a manner that suits you rather than in a manner that doesn't stress my body. Why won't you use the pad and sheet to turn me as one unit? Instead, you allow my body to twist as you hold me one-handed. How good you are at your job. What part of "my muscles are dying" don't you understand?

I'm so misunderstood. (How cliche', eh?) But, so appropriate. With ALS, my dysphasia has me down to mere words, single word responses and requests that I cannot help but butcher. I feel bad for my caregivers having to discern what I'm saying. It's worse than ever and I'm lucky for what I have. Funny feeling both gratitude and dread. For an example, look at my communication with my beloved husband. Yes, I said "beloved". We've had our issues but, damn, he's still with me, bringing chocolates, flowers, food, and spending time with me. Nobody else comes close to his level of devotion to me. He feeds me, brushes and flosses my teeth, downloads audiobooks, and plucks stray hairs for me. That's devotion. It is not pretty. In many ways, he understands me the best, but he came with baggage. (Didn't we all?) Anyway, if he cannot understand that I'm having an issue and I begin fussing, crying, and issuing terse one-word commands, he's o

As I mentioned previously, I use this blog for many reasons; today, I need to communicate with my caregivers. If you get something meaningful out of this so much the better. First, you should know that my ability to breathe properly depends upon you. My muscles don't work well. The diaphragm is a major muscle necessary for breathing, and positioning and arm support is essential. The effects of gravity upon my ALS-ravaged body squeezes air from my lungs while the diaphragm struggles to lift and bring new air in. Therefore, whenever upright, my upper body and arms must be supported. Equally important, is not expending energy and breath answering unnecessary questions or by relying on patient to provide instruction. Please learn my routine and read all care plan updates. "Head down". Lean bed down until approximately 45-degrees.  (DO NOT remove pillows beforehand.)  Remove pillows supporting the arms.  Lower bed completely, watching for signs of respiratory distress

Not sharing much publicly because I've been writing so often explaining issues directly to caregivers. I'm having an awful time trying to get my meaning across. Most people project Their own shit on me. .