IntrinsicTina

"We are going to know a new freedom..."  ALCOHOLICS ANONYMOUS P. 83 I used to look forward to getting off work so I could go drink. I would sit on a barstool talking to other patrons about things I used to do and things I was going to do. Funny thing though, the more I drank, the less I did. When I wasn't drinking, I was thinking about drinking but I would never have admitted it. Recently divorced, I made a geographic from California to Washington state. The courts decided on joint custody and since I chose to leave the state, I got visitation. When my daughter visited it freaked me out. I felt like such a failure as a mother, losing a marriage and a beautiful home. Living with my parents at 30. I was such a loser! Guilt, shame, and remorse was my constant companion though I kept it cloaked with false bravado. I would plan to spend every waking moment with her but I would get a case of nerves and I'd have to go fortify my courage and ego. Invariably, I got overwhe...

"Life will take on new meaning. To watch people recover, to see them help others, to watch loneliness vanish,....To have a host of friends -- this is an experience you must not miss.   ALCOHOLICS ANONYMOUS P. 89 I'm so grateful to have read this early in my recovery. I needed reassurance that I wasn't going to miss out on life by giving up my old haunts and playmates. I wasn't focused on the "others" benefit, at the time, so much as "what was in it for me". Relinquishing, or more accurately, lessening my selfishness came later, after working the ninth step (a few times). It was and is, a pleasure to watch others "get it" and embark on their own path to recovery. When they do that, they bolster my recovery and ensure the survival of our fellowship. From my first days in the rooms, people told their stories and reached out to connect with me. There were many meetings, service positions, alano clubs, and sober activities. Lots of opport...

"Cling to the thought that, in God's hands, The dark past is the greatest possession you have--The key to life and happiness for others. "  ALCOHOLICS ANONYMOUS  P. 124 Love this! I have, indeed, clung to the belief (not just the thought) that my past (dark, mundane, and bright) is the greatest possession I have. I have used it to connect with people my whole life. Navy brat to Navy Brat. Alcoholic to alcoholic.  At one time, I was ashamed of my experiences. I thought I was a lowly piece of crap because I came from a broken home; was molested by a male sitter at 5 years old; grew up on welfare intermittently; became sexually active early. .I added guilt and remorse with my own failed marriage as well as the loss of having my daughter with me when I moved to another state. Heap on more when my drinking accelerated and I went from failed relationship to failed relationship. Today, I realize that all of those adverse experiences made me stronger and made me a more inte...

Do Not Resuscitate. That is a scary place to be. I have a purple wristband on for everyone to see. That requires trust which I don't really feel. I worry that DNR broadcasts that I want to die which I do not. I want every day possible as long as I am well-cared for and in an enjoyable, aesthetically appealing environment. I hold out a flicker of hope that I might get a grandchild to look at, smell, and rest upon me. Ironically, I worry that I will die from neglect rather than from natural causes and the thought angers me. In my mind, I hope there will be an inquiry but I know better. What's the difference? I mean, either way I'm dead anyway, right? Nobody cares but me. Let it go.

While some people really Like and appreciate my blog, I learned that some members of my family are looking at as hurtful. I would like reassure my family that I love them and treasure them. I would also like them to know that my blog contains thoughts, feelings and perceptions at one point in time. This blog contains bizarre dreams brought on by stress and medication, mild though it is. I write to "exorcize my demons" so to speak.  I write to connect with fellow PALS (people with ALS), caregivers of PALS, fellow people in recovery, and the curious. Can you imagine losing the power of speech and not be able to bounce ideas off of your best girlfriend; not be able to profess your love to your lover; not be able to confess a sin with your own lips; not be able to scream out your pain; not be able to call your sponsor; not to be able to sit with you and discuss an issue rationally? My blog is a composite of who I am, who I used to be, and who I don't want to be. This blog...

.Drinking a glass of water can take on new meaning when you have ALS. With me for instance, drinking a simple glass of water is risky. The muscles in my throat and mouth have atrophied enough that I risk the water pouring right down into my lungs. For the most part, I avoid it but there is one activity that I cannot seem to avoid water. Brushing my teeth. I know about thickened water but have you tried that stuff? It not only seems wrong, in my opinion, it tastes and feels wrong. How does one clear thick toothpaste by adding thick water? Not gonna happen. And when they flavor it, how do you get that "just brushed" feeling? So, once in a while, I risk it. Room temperature water, straight straw, my chin tucked,and placed over a basin. The idea is that I intake water, hold it in my mouth, swish and spit into the basin. That's how it's supposed to work. My body, muscles, get confused and my swallow mechanism kicks in and...Oh no! I start to sputter, cough, and choke. ...

As I've mentioned before, I watch a lot more television these days being confined. But my viewing choices have changed dramatically since losing my mobility and Independence. I spend hours on Discovery and I've gotten fond Alaska: The Last Frontier, Alaskan State Troopers, Gold Rush, Moonshiners, Weed Country, Dude, You're Screwed!, Dual Survival, Deadliest Catch, and the like. I also love the Weather Channel where I watch Weird Weather, Prospectors, Why Planes Crash and Highway Through Hell. Formerly, I strove to see design shows and HGTV was a personal fave where I absorbed Income Property, Property Brothers, Love It or List It, and Color Splash. Network television series' like The Good Wife, Private Practice, and Gray's Anatomy were my guilty pleasures. Of course, I had to view the various cop shows ; CSI, CSI: Miami, CSI: New York, Criminal Minds, NCIS, NCIS: L.A., Law and Order, Law and Order: Criminal Intent, Law and Order:SVU, Cold Case, Without a Trace, to...

I've been complaining profusely and whether you realize it or not, conditions are worse and, at times, better than you can imagine. My accounts of care need to reach the light of day. My brutal account of living with ALS should be known. Otherwise, how else will anyone learn how to care for us in the future? I am not a trained writer (obviously), this blog is not meant for academia, rather it is meant for me. I need an outlet to express my self, my emotions, to review my own perceptions and beliefs. I am, however, inviting you to view my world by virtue of selecting the Public button when I created this blog. I've been "cooling my heels" the University of Washington Medical Center over the past month. And I've had good and bad experiences since then. Unfortunately, I've focused on the negatives in my blog. There is a lot to love about this place, too. Forget everything you've ever heard about hospital food. The eating is good on the general menu. And...

"A body in motion tends to stay in motion." crows a popular drug commercial. That just isn't true! ALS happens. Unfortunately, it seems to occur in people who are active. Some of us who've been afflicted morbidly joke that ALS also stands for "active living syndrome". A segment of us were struck down in the prime of our lives.  Military are 50% more likely to contract ALS. Why? What does this mean?!

Some days I can really relate to Brittany Morgan, the lady with brain cancer who chose to end her life on her terms, rather than die horribly on cancer's terms.  Death With Dignity, in my humble opinion, does not go far enough.  While I am glad everything worked out well for her (presuming she is not gone to Hell for her actions), people like me with a muscle disease cannot self-administer the prescription, Therefore Death With Dignity is not really attainable. I am forced to live this life such as it is. Although I missed my window of opportunity, I doubt I would have taken it when I was able. I still had hope. I get so very frustrated with caregivers, my condition, and myself! The nurse last night was unhelpful and patronizing. When I wanted to be turned onto my right side, he told me that he could not, although he had done just that while changing me moments before.When I tried to speak to him, he didn't even attempt to understand me. He kept saying mm-hmm mm-hmm mm-hmm...

I saw that incredible, historical comeback game from kick-off to that glorious winning touchdown by Kearse! What a fabulous time to be a new football fan, particularly a newly-minted fierce Seahawks football fan. I saw Richard Sherman catch that interception. It was awesome! And I suffered through the agonies of missed opportunities, fumbles, and the ticking clock. As hope started to wane, I witnessed the Packers miss a pass then all bets were off, the Legion of Boom was going after the Championship.

ALS is a real terror, or maybe it's a terrorist. I mean, it came out of nowhere, launching an insidious attack on all parts of my body. (Actually, all parts of our bodies, as I am not the only one.) ALS attacks everyone of us differently but it is never kind and it ain't pretty.  It's devastating. And that does not describe it. The only experience I'm really qualified to report on is mine. ALS symptoms first manifested in my right index finger. I noticed that I lost the ability to pinch a binder clip open. Then I realized I was having difficulty lifting heavy files from the upper file cabinets. Next, it occurred to me that  I'd been making an unusually high amount of typographical errors, particularly those letters typed with the index finger. I was unusually stressed, sniping at my husband, and fed up with my tax-evading employer. I finally broke under the pressure, telling my boss that I refused to commit fraud on their behalf, sealing my fate with the company. ...

WARNING: there will be gross, disgusting, and/or explicit stuff in here. You have been warned. The ALS has reached my bowels. (Deadpan Yippie) Yeah, I actually felt my rectum for the first time in my life. A series of involuntary spasms over a couple day period and I can no longer control my bowel movement. I'm at the mercy of peristalsis and I hate it. Complicating things is the development of constipation. Yeesh! And I don't have muscle tone to push anything anywhere! I'm no longer a stranger to Miralax and stool softeners. I'm reduced to discussing my "B.M." how big, how small, what consistency? . I've actually been feeling spasming in a lot of my organs over the past year. It's been truly frightening. I mean think about it, my heart is a vitally important organ and I've had fasciculations around my heart. Scary. My diaphram is weak. My lungs are weak. Kind of necessary for survival. I'm not looking for sympathy, I'm just chroniclin...

.I watch a lot of television. I can't seem to help myself. I'm sitting in a hospital room with limited options. I blog and share parts of my life. I read FaceBook and learn about others lives and keep connected. I listen to audiobooks and delve into other worlds and get out of my head. I watch TV to learn something or to Be distracted. 

They say we have to conserve energy. Hah!  I suck at that. As a consequence, I crash at unexpected times. Yesterday was a typical example. I had a very stressful day without realizing it until the end of the day. I've been in the hospital since December 21st, it's now January 8th, and I am technically stable. Therefore, it's past time to find a new home. OMG!  I've been through the wringer with regard to a well-rated skilled nursing facility. As a matter of fact, I was discharged to that SNF from this very hospital a year ago almost to the day. I chose it based upon a rating, it's location (the other option was Shoreline, far from my home), and it's marketing brochure touting fine dining (not), and a picturesque lake location. This well-rated skilled nursing facility was decorated for my grandmother or her mother. I was placed in a dark, dingy, private room overlooking a graffiti-emblazoned fence on a rundown home. Epic! I work my whole life, argue with a frug...

I was called a free spirit by a woman who bothered to get to know me. I was shocked by her assessment. At that point in my life, I had "I don't know how many" jobs. I was a food service worker, cashier, bartender, typist, chiropractic assistant, rental assistant, real estate personal assistant, busgirl, administrative assistant, executive assistant to the president of an aerospace company, a business owner, a Mary Kay representative., need I say more? I was unemployed and looking with a newly-acquired accounting degree after 40. I was Alcoholismworking on my second marriage, blending-in my beautiful daughter, making amends, staying sober. Which implies that I was a drunk at some point in my life. On closer inspection, following a bad break-up of my marriage to my daughter's father, I got kind of wild. I attempted suicide, fell in hero worship with my paramedic and learned about skydiving. Went skydiving and had it videotaped for posterity.  Started hanging out with ...

Wow!  Some members of my family are really sick despite being physically well. One of my sisters came here to straighten me out. Silly me, I thought she was here to visit me. I was just being repositioned after my first diaper change of the day. I'd been awake about a half an hour and was still thinking about my dream that got disrupted. I was eating Burger King Whoppers, fish and chips, fries with mayonnaise and ketchup. And I walking on a sidewalk, driving a car, carrying flooring panels, hopping up into the bed of a pick-up truck, keeping building materials from sliding out of the truck onto the freeway, signing my paycheck, discussing my plan to buy SPD Laundry on a busy corner in Chinatown with a Cambodian businessman. You know, all things I cannot do now.  So, she asks me "What's this I hear about you throwing Rod out of here?" i try to answer her with, "I did not throw him out. He walked out." Unfortunately, I have severe dysphasia and my words come...

 I don't know what triggered it but I had the strangest flashback dream about me and my family. It was a time when my brother was a tow head baby boy. The only one to a family of three sisters. But, surprisingly, this is not about him. It only seemed to establish a time in my life. We piled into a beater truck (which is a fallacy since we never owned one growing up. What is interesting is that it was my husband's 1979 rusty yellow Ford F250 but it had a crew cab to accomodate a family of six.)We were leaving McDonalds, the one restaurant we could afford on occasion on a sailor's salary. Up, we climbed into the litter-strewn back seat and down the road we went in a loud, conspicuous belch of exhaust.  (Eye roll)  Next scene: I'm elbow deep in nasty, lukewarm, suds-free (thank you bargain brand dishwashing detergent), ash-floating dishwater.  At my right, should be my sister, Dawn, but she's in the midst of one of her famous disappearing acts, for which she's k...

Here it is, a new year! I did not think I would see the holidays at this time last year. And though it's a morbid thought, I doubt that I'll make it to the holidays of 2015. It's not that I don't want to be around then. I do. But, as this latest bout of illness has shown me, life is fleeting, and I am impaired. I know I need something to look forward to.