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...