IntrinsicTina

25 Went to the U Dub yesterday to see the pulmonologist. Been considering a tracheotomy and ventilator to give myself more time on the planet. As you can imagine, the decision to be "trached and vented" is a major one. Will it hurt, is the least of my worries. I was told a few years ago how easy the PEG tube was supposed to be; finding the reality to be excruciating, when the male doctor placed it between my breasts. ALS is painful. Our reality is loss and pain (and medication). Further loss of independence is a big consideration. My reality has me cared for by paid caregivers in a nursing home setting. I'm in a top notch facility but the nurses have not demonstrated proficiency operating the cough assist and suction machines, two machines essential to clearing secretions and preserving my life. And now I have to trust more unknown "professionals" on yet another machine in order to extend my life. . Oh, and my current top notch nursing facility, does not ...

Plastic garbage bags and totes litter my floor but they don't contain trash; they contain stories of my life, in the form of clothes. I have ALS, otherwise known as amyotrophic lateral sclerosis, motor neuron disease, or Lou Gehrig's disease. This degenerative neuro-muscular disease destroys the motor neurons, the communication system between the brain and muscles, which renders one paralyzed and breathing compromised. There is no treatment nor cure thus ALS is 100% fatal. Since I find myself in the latter portion of the disease, a quadriplegic, confined to my bed most days, I have no practical use for much of my hard-earned wardrobe. Finally the stars aligned where I could bear the dreaded chore, and my husband was willing to transport the dozens of 30-gallon spring green totes, full of shirts, pants, robes, career-wear, sportswear, and dresses to my nursing home. (Yeah, I live in one of those! It's where one goes when one doesn't purchase long-term care insurance ...

Occasionally, we are seized with a rebellion so sickening that we simply won't pray. When these things happen we must not think too ill of ourselves. We should simply resume prayer as soon as we can, doing what we know to be good for us. -- TWELVE STEPS AND TWELVE TRADITIONS, page 105  Gee, I could have saved myself years of self-reproach by taking it easy on myself. "Try" as I might, I never could make prayer, in the traditional sense, a daily occurrence for stretches longer than a month. I had good intentions but inevitably, I'd be running late and forget. Or worse, I'd get a big, fat bout of attitude about not getting my wishes (the permanent position at the Gates Foundation, being fired from my last job when my health deteriorated, the cancellation of my Panama Canal cruise, and the various abandonments I experienced following my ALS diagnosis) and off I'd go, cursing my Higher Power, turning my back, isolating, and wishing I were dead (actually, I wa...

I've been critical of how slow communication is on a speech generating device; pair that with a mind-reading, impatient, git-r-done husband, and you have potential for comedy. A few nights ago, my micro-bead-filled neck pillow sprang a leak. My caregivers placed medical tape over the offending seam, in an effort to stem the flow of teeny, tiny, little, electrostatically-charged, styrene beads and set it aside, so I would remember to ask my husband to buy a new one. Tonight, as he was trying to get out of my room at, what he considers, a decent hour, I anunciate "p-i-l-l-o-w" to alert him to an urgent need and begin visually-pecking out instructions on the Tobii: T-a-ke m-y b-l-ue p-i-l-low. I n-eed y-ou to b-u-y a n-ew o-ne b-e-c-ause... " Riiiiiip. Off came the tape and out spewed a thousand little white balls. Oh.

  .1 1 1                                                     ...white as a Mormon. ...the smell of cat piss and dying parent..                                        "I wasn't ready to become an official member of the 'Dead Dads Club'." This gleefully irreverent and vulgar remembrance is just what the doctor SHOULD HAVE ordered. Marshall tells it like it is, no Pollyanna "think positive" white wash of the gritty details of living with parents dying from ALS, aka Lou Gehrig's Disease and Cancer from a spoiled child-turned-caregiver's point of view.

My friend, Peter is meeting with the management of our "home" to discuss ideas on how to make it a better place for ALS patients. What a great idea and a much more positive position to come from than I come from. I'm not exactly certain of the format tomorrow but since I cannot communicate quickly on-the-fly, I better write up a few ideas from my viewpoint. Since ALS robs us of our muscles, but differs in which ones, it's important to be fully educated on the effects of muscle loss by different regions of the body. While nurses learn anatomy and physiology, I don't believe PCT's, CNAs, and such get that education. And, let's face it, book learning is vastly different than hands-on experience. I find the PCT's, by and large, far more adept at attending to the activities of daily living, particularly, if they have experience with people with neurological deficiencies or brain injuries. They should get intensive instruction on ALS. It's remarkable...

Tonight we had a very special evening event at Bailey Boushay House. Viva Italia--a night of opera and delicious Italian fare. It was like a night out on the town without the logistical problems associated with transporting people with disabilities. The third floor dining room was transformed into an exclusive Italian ristorante´ resplendent in cabernet-colored linen, candlelight, plants, and sculpture. Flutes of sparkling cider caught the firelight playing on the computer monitor. It began with several opera numbers (I'm an opera idiot and couldn't begin to offer further descriptors) and proceeded with a gorgeous Caesar salad in a baked, filigree cheese bowl. A few more operatic tunes followed by a delicious tomato basil bisque that I'd swear contained real basil, rosemary, and parmesan reggiano. More gregarious opera and then a plateful of rustic Italian favorites, manicotti, pasta Alfredo, and chicken Parmesan, asparagus, and red pepper. Mangia, mangia, mangia! Still...

I looked up Huntington's Disease. Wow! If I thought I had it bad!!?!! Huntington's is like ALS, Alzheimer's, and Schizophrenia altogether. I cannot imagine, and I don't have to. I see it everyday. (or, I think I do.) My neighbor here at "the home" seems to have it. I say "seems" because nobody will share her diagnosis with me, rightly so, due to HIPPA laws. But, you cannot hide symptoms. Tiny, bird-like in appearance, translucent pale skin, luminous dark eyes and tresses, and torturous, stick-like limbs.  She evokes the protective mama bear in caregivers and patients alike. I tried making friends when I arrived to no avail. She'd look down, ignoring me and hyperfocusing on her activity, usually being fed. I was dismayed see her spend days in a darkened room despite a prime sunny location. Not unlike me, irregular sleep\wake cycling; must have others perform all activities of daily living; very limited ability to communicate. She swings from...

I'm in a really good care facility, I really, really am.  Therefore, I am loathe to complain as much as I do. It would be incorrect to assume that Bailey Boushay House is an awful facility based on my complaints thus far. On the contrary, it's a fabulous place with mostly high quality caregivers. (I'm in a position to know.) I'm upset about a recurring problem I'm having with a male charge nurse. The first time I became aware of him was following my arrival, February 2015. I was struggling with caregivers, unfamiliar with my care, who placed me in a situation compromising my breathing. As a paralyzed person, with severely impaired speech, I was fighting a losing battle for my life. I was, however, able to make some noise through adrenaline-fueled panic yelling. He turned away in the hallway, muttering "Oh great, another noisy one." or a close approximate. I've had numerous negative encounters with him since. When responding to my calls, he used min...

It pains me to send caregivers packing. Before ALS, I was much more polite--not that they would believe it. Some days I awaken intolerent, protective, without energy stores. Today was such a day. I was awakened from a dead sleep, in the midst of a vivid dream, by a man in my face, asking if I was having breakfast. I wasn't ready to answer the question since I was still groggily trying to extricate myself from dream state to reality. I'd been carrying an armload of clothes from a motel room, my husband and I were staying in, to a disembodied voice, "Tina, are you eating breakfast?". I responded, "Let me wake up." To which he responded, "Your hair? Your head? Do you want your head up? Are you having breakfast? Do you wanna eat?" all in rapid succession. My ire raises as I'm peppered with questions by this little man leaning into my face, hands on knees, like he's talking to a kindergartner. Why, oh why don't they follow the care ins...

My heart yearns for human touch. I spend my days within the confines of my hospice room, needlessly. I have a state-of-the-art head-operated wheelchair. I sold my beloved Harley Davidson Softail Deluxe to buy a wheelchair van. Caregivers, doctors, and nurses but, rarely, people who love me, bother to be with me. Nitrile-encased hands clothe, feed, and change me. Where are the people to hold my hand, touch my face, or hug me? Without the gloves? Even my husband, during his visits, seemingly has forgotten the value of touch and must be prompted to hold my hand, hug me, or kiss me.

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 ...

Starbuck's mugs and cards, that WAS my hot button collection. I once coordinated my coffee travel mug to my outfit-of-the-day. My chocolatey-rich brown Calvin Klein business suit paired well with my tall brown insulated mug with golden swirl embellishments. My pink silk jacket from Rottles, one of my more luxurious purchases, went perfectly with the red with the gorgeous pink rose emblazoned thereon. The stainless steel with the navy power suit, etc.   So successful, so affirmed, so necessary. I was contributing to society, paying taxes, living responsibly within my means. My collection got donated to Good Will as I worked at clearing clutter for my husband's sake. I think my yarn stash qualifies as a collection.  I spent free time knitting and collecting balls, skeins, and hanks of delicious fibers like: self-striping sock yarn, woolen tweed from Ireland, silky, shiny ribbon yarn, oh-so-soft and decadent angora, sturdy wool from Germany, innovatively-dyed Japanese fibers,...

Orange, gold, rust, burnt sienna, ochre, raw umber; the riot of fall colors, in the trees and at our booted feet; a drive in the countryside; the taste of hot apple cider on my lips; the satisfaction of a truckload of firewood we gathered and cut ourselves; elk herds on the move; hearty stews, savory soup, crusty whole-grain bread, pumpkin and gingerbread spice lattes; these are the memories I tap into the most this time of year. Cabela's fliers in the mailbox; Carhart's camo-clad hunters swarm outlying areas; mushroom garthering; huckleberry picking; logger burgers; forest service roads; cheese sandwiches on the woodstove; warm quilts, cool sheets, and flannel nightgowns; cold butt, warm heart.  Immensely grateful to have the well of memories to draw upon.

I read other people's blogs and get critical of my own. I'm not positive enough, not eloquent enough, not organized enough; I'm far too arbitrary of topic. I'm unable to add pictures and links due to system limitations and that frustrates me. Next thing you know, I'm not blogging. I have to step back and remember why I blog. I blog for myself. I blog to remember. I blog to communicate. I blog to work things out in my head. I exorcize demons. I pour out my heart. I blog to say what my lips cannot. My blog is my voice. .