IntrinsicTina

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...

I'm on a modified diet.  I did not choose to be on this diet. The management of the facility defers to the speech therapist. Speech therapists professional opinions vary, in my experience. My first speech therapist was thorough and gave me a standardized form, detailing recommended diet, and guidelines pertaining to oral care: Check for pocketing after every meal; Small bites; Sauces and gravies to moisten foods for cohesion, No mixed consistencies; Foods to avoid; Foods to Beware of; (Liquifiable foods like jello and ice cream); Liquid recommendations; thin, syrup-like, pudding, npo; Alternate sips and bites; and such.   I think informed choice is the fairest objective. But despite being of sound mind, I do not get to choose. I will, however, endeavor to educate. The Dysphagia Advanced Menu clearly says hash browns but the kitchen sends mashed potatoes. Mashed potatoes just aren't appetizing at breakfast, but catsup on hash browns or sliced, fried potatoes (aka Home ...

17 A friend died today. That phrase, all too familiar when one collects friends with ALS. What was noteworthy for me, was my reaction to it; I was enraged. An example of frontotemporal disease, the emotion-altering gift to 10% of ALS sufferers? Or an understandable reaction to this debilitating disease? Or I'm just an a**hole? You be the judge; I can't stop you anyway.  My first reaction to the news was grief; tears streamed down my face, as I recalled her effervescent personality. I only met her a few years ago during an ALS event. She was magnetic; you wanted to be lucky enough to be in her orbit. If she was attractive, the added combination of her husband's devotion, and her faithful sidekick, a lovely retriever, made her impossible to resist. If I'm unflinchingly honest, I coveted her life, with or without ALS. Her husband never abandoned her, never left her to steal her last vacation, and probably cuddled her in bed toward the end. Her community came together to...

My hospice care is state of the art. I believe that. Formerly, I was warehoused at a Life Care Center, a well-rated skilled nursing facility. My reality was tantamount to prison. I was not lovingly cared for; I was not even professionally cared for. I survived poorly trained, and yet, certified nursing assistants, poorly staffed, crowded conditions, and sadistic management.  Following a 60-day stay at the hospital, I was discharged to Bailey Boushay House, a skilled nursing facility geared toward the care of patients with HIV-AIDS, who also take ALS, Huntington's, and end of life care. They are more generously staffed and operate in a culture of respect and inclusion. I am fortunate and blessed to be here. When I arrived, I was a skeptic, watching for the shoe to drop, when the veneer would wear off, to reveal the real goal of money, not caring. Was overwhelmed by the stark differences, so many differences! I had my own room, not having to listen to Keeping up with the Kardas...

Care Conference seems like a big waste of time and energy. Not enough follow thru. Email and signs don't teach newcomers nor old timers. Still no emphasis on time consciousness. Whenever I'm changed they ought to hold their breath, or breathe thru a straw with a clothespin on their nose, then perhaps they'll rush to raise my head and get pillows under my arms so I can get a good breath. Regarding the room issues, the overhead light closest to the windows has already been replaced. Never fixed. Always flashes intermittently, which interferes with Tobii operation. Nobody gives whole story. Tell Tate the history. I'm always asleep when he arrives. Same story with the DVD Player, never Finishes downloading the movies on Netflix since I got the new one.(Tate has already addressed all of these this very morning). Thank you Tate. I'm the weak link. Everyone assumes I can fend for myself but I cannot rely on the tobii working.  Dayshift doesn't place tobii in front ...

Interesting experience this night. I couldn't respond to my caregivers when they worried and fussed over me. I could hear them asking me questions but try as I  might, I was powerless to communicate. What's more, I could not move air in and out of my lungs. It was like I was merely a spectator, no longer a participant. What's more interesting, to me at least, is that I was not filled with terror. It just, was. I wanted to tell them that the bipap was not turned on but was, in fact, further exacerbating the problem. One of my complaints about care in a facility, is that caregivers are ill prepared to care for us, PALS (people with ALS). With staff turn over and the nature of shift work, there are far too many caregivers on rotation to learn how to administer to our specialized needs. And just when they are trained up to give good care, they move on. In the year and a half  that I've been here, the staff remains ill prepared to effectively attach my bipap mask to my f...

1 1 Dear Caregiver, I need for you to realize how much ALS impacts my breathing. Like most caregivers, you probably already understand that my muscles are failing me. ALS affects neurons in both my brain and spinal column, overexciting, then killing them. Hence, my fasciculations (muscle twitches, nee spasms), paralysis, dysphagia (swallow difficulty), and dysarthria (speech difficulty). ALS affects my breathing making it difficult to breathe while flat on my back or when I'm set up at 90-degrees.  Do not underestimate the effect, the weight, that gravity has on weakening chest muscles, including the diaphragm. It's like trying to breathe with a 100-lb weight on my chest. It can, literally, kill me. It's why I fly into a rage at caregivers, seemingly without provocation. I'm in fight or flight mode, trying desperately to live to see another day. One of the most problematic activities is changing my Attends. It is essential to minimize the amount of time I spend fl...

My psychologist gave me notice today.

I'm chagrined to realize how little I've managed to produce blog posts. I must admit that I've been so fatigued to the exclusion of all activities, save for listening to my beloved audiobooks, bathing, and attending my monthly ALSA meetings. Oh, and watching the TV news, and movies via Seattle Public Library and Netflix. How small my world has become. I have read some good books, which I chronicle and review on www.Goodreads.com/IntrinsicTina. I'm an avid reader of detective novels, mostly pulp fiction, formulaic works from Jonathan and Faye Kellerman, Kathy Reichs, Michael Connelly, Clive Cussler, and James Patterson. But I've grown fond of biographies and memoirs, listening to the stories of Drew Barrymore, Wildflower , Marial Hemingway, Burt Reynolds, Enough About Me , Carrie Fischer, and Sarah Silverman, to name a few .  You may think that my life is not worth living, but I think it is. I can no longer do what I used to do, but I have love in my heart and a ...