IntrinsicTina

At Bailey Boushay House, they want to get to know us (patients) better, so they ask us in this assessment... Preferred Names:   Tina (It's a perfectly good name, why lie?) Life's Work:  Accountant, Executive Assistant (Let's face it, Awesome Super Hero with Ninja Skills isn't a thing.) Favorite Music: Rock, Pop, Country, Reggae, Alternative, Oldies, Christmas, Funk, New Age, Contemporary Christian, Cllassical, (What have I missed?) I do love me some Katy Perry, Pink, Pink Floyd, Florida Georgia Line, Nine Inch Nails, Beyonce', Usher, Counting Crows, Bob Marley... Favorite Music To Relax To: Harp, Classical Favorite Movies: Under the Tuscan Sun, Heaven Is For Real, Joe's Apartment Favorite TV Shows: House of Cards, Grey's Anatomy, CSI, NCIS, Criminal Minds, House, Highway Through Hell, Insane WX, Alaska: The Last Frontier, The Talk Favorite Books: Gone Girl, Big Book of Alcoholics Anonymous, my own photobooks Favorite Sports: Seahawks football

I choked while wearing my mask last night. Nobody heard. It woke me up. My muscles in my throat misfire and my swallow goes wrong. It's a horribly frightening experience, leaving me feeling utterly alone and helpless. I really feel my vulnerability and my separateness from my husband and a loving attentive family.

1 Wow! Spot on...In so many ways.  Granted I wasn't in the the same socio-economic circumstance, and neither do I play piano but I was passionate about knitting and I lost the ability to engage in my passion practically from the onset of the ALS. Symptoms first manifested in my right hand as well. I was big on juicing, supplements, and did not worry about fats nor calories. But ALS advanced relentlessly. I hired friends as caregivers and had to bear the humiliation of being toileted by them.One of the worst hurdles for me was allowing a long time male friend wipe me following a toilet. My mother, stepfather, and sister all toileted me as well. Of course, my husband had to attend to all of my most delicate needs, showering, dressing and make-up application. I could really relate to Hillary Swank's character, Kate, in all circumstances except, she chose not to use the bipap (breathing apparatus).  I don't really get why somebody would opt out of a non-invasive solution to

1 I met my husband in a neighborhood bar. (There, I've said it.). Friday night, riding my Electric blue 1997 Harley Davidson Sportster Hugger 883, I'm not going to make it home to use my own powder room, An odd neighborhood enclave enroute houses a grocery, a dentist, a yarn shop, a bar, and a bowling alley with a cocktail lounge. I chose the bar, hoping they served root beer on tap. (Understand that I was clean and sober a year and a half and actually determined to stay that way.) I park my pride and joy up on the sidewalk and under the eaves, dutifully securing my fork locks. I hitch up my black leather chaps, unsnap my leather kercheif, and unzip my classic leather biker jacket, and stride in like I own the place. I place my order, do my business, and "belly-up to the bar" as they say. Even though it's the first time I've been to this bar, and months since I've been to any bar, an acquaintance from the Christian Motorcycle Association (CMA), walks i

Two and a half years since my ALS diagnosis. Of course, if you follow my blog or know me, you already know I'm in a power wheelchair and am a quadriplegic. I'm still able to eat though I must be fed. Drinking is getting very difficult and I get most of my liquids through a PEG tube. I'm breathing on my own though I wear a bipap at night. My voice is profoundly effected by muscle loss causing dysphagia. I probably feel that loss the most. To lose the ability to express oneself is truly awful. I lost the ability to type normally, to lift large files from a file cabinet, to pinch a binder clip, and to engage in my most favorite past times, motorcycle riding and knitting when I lost muscles in my right hand, mainly my fingers. I lost self-confidence when I was dismissed from my job for filing a worker's compensation claim. In the earliest onset of my disease, I had significant nerve pain as well as sporadic diminishing range of motion. When my opposing hand and arm star

I remember catching fireflies,  putting them in a jar, as a girl of five. I picked pears off a tree that overhung an alleyway on my route home from school, then enjoyed the forbidden fruit. .I had a golden cat who chased a gray mouse through our living room sending my mother, 3-year old sister, and me screaming atop the sofa and chairs. We lived in a farmhouse and I watched Romper Room. A daddy longlegs skittered across my dirty kid legs as I teeter-tottered on a broken kitchen chair back. I played grocery store and laid out a bedroll for group nap time in preschool. We lived in an apartment attached to a bakery. My maternal grandparents visited and a photo was snapped. Grandma held Dawn and Grandpa held me. I held Grandpa's chin. Walking through the back of the flour-caked kitchen, I saw scrumptious pastries and colorful toys stuck in the cupcakes with my hungry kids eyes. We lived in a two-story apartment building next door to a large farmer's field.  That field was my

Boy, what a difference! I had my first care conference at exactly 3 weeks of residency. We (my husband and I) met with the social worker, physical therapist, chaplain, and nurse manager to discuss my care. They covered every aspect of my care: building a comprehensive and detailed care plan, how I was socializing, the spiritual portion of my life, recreation opportunities, how I'm doing physically, and what do I need going forward. Not once did they mention money. Not once did they verbally bash on me.

First ever episode of CSI: Cyber! So excited to see this new addition to the CSI franchise. I wasn't that crazy to hear that Patricia Arquette was playing the lead role but so far, so good. Action packed and revolving around computer-related crime. Add in decent characters and I predict I have a new Wednesday night activity. Woo-hoo!

Had an "episode" today. I'm telling you, not to brag, but to be brutally honest. I am not proud of it. By episode, I mean a lapse in polite socially-acceptable behavior, an emotional outburst. I will explain how it came about (for myself as much as for you).  I was at the end of eating my lunch when I choked. It happens. Just part of the disease process of ALS As muscles fail. What began to ramp up my emotions was my thoughts that I wasn't getting the help I needed. My power wheelchair had cycled off leaving me powerless to tilt forward to clear my airway (my PCT was not aware of my technique) so I coughed away expending energy. As a result, I was coughing up secretions and needed the suction machine which had NOT been set up. The aide immediately set about putting the components together but the going was slow and I kept coughing away. Without the suction machine working, I was thinking "Oh  God, this is just like the last home I was in, paying lip service t

It works -- it really does. -- ALCOHOLICS ANONYMOUS p. 88 It just kills me when people find out I have long-term sobriety in AA then feel inclined to AA bash. "Yeah, I tried AA, but...I couldn't get past all the God stuff"; or "... People were so holier-than-thou" or "...It didn't work for me." or whatever their explanation is. They're merely excuses. The scapegoat that allowed them an escape hatch to exit a real opportunity to get sober with their ego intact. It's a mechanism of denial, one of the strongest chains that keep us bound by the disease of alcoholism. It's a lie. The truth is that AA doesn't require that anyone believe in God. A God of their understanding or anything that they are willing to believe in that has power. Just because I made peace with God as I misunderstand Him, and it works for me, doesn't mean you have to believe as I do. I'm no authority. I have friends that stay sober on an undisclosed Higher