IntrinsicTina

1 A lot of emotional drama has happened with me once again. First, I went ballistic when my husband sprang another nasty little surprise on me. He told me in an offhand way that he would not be visiting me over the weekend when he was aware all week long that was the case. That was the culmination of a month of nasty little surprises  I got all month long from my conniving husband. I figured out that after he talked me into a limited power of attorney for the purpose of listing then selling our properties, He sold property to his brother. After questioning my husband he feigned forgetting to tell me that he sold some property to his brother. He also told me that he did not list the properties per our expressed verbal agreement. Additionally, he sold a house and four lots for about $25,000.00 UNDER market value. Within the next few weeks, he tells me (after the fact) that he sold our retirement home on a contract basis (again for less than market value) to his brother's daughter

So much to say...So little energy. That is how much of my life is these days.

Books, specifically audiobooks, are my faithful companion. Each evening I am put to bed with my iPad and an audiobook queued up. I fall asleep to a story which keeps my mind occupied and out of dangerous territory. Today I finish "reading" Kathy Reichs' "Seizure", about four intrepid kids who've had their DNA crossed with wolf DNA (read "Virals" for that story), Who go on a hunt for pirate's booty to save their parent's jobs and to keep their "pack" together. It's a great little romp on the east coast, Charlestown, South Carolina. I've also read the Night Huntress series and followed the exploits of undead Bones and half-breed Kathryn "Kat" Crawfield. Including "Up From the Grave" By Jeaniene Frost. "Shiver", "Linger", and "Forever" by Maggie Stiefvater was a trilogy about kids getting a virus by being bitten by other infected wolves. The characters are likeable, hateab

This is the day. I cannot hardly believe it's that time again already.  Sometimes, I wonder why I continue to go to these quarterly appointments. I mean the news is never good. It's a recording of measurement declines. ALS has two key measures, FVC (forced vital capacity) and the FRS (the meaning escapes me but it's a questionaire that gives a score that is a numerical representation of how helpless we've gotten. Kind of a drag. But not really. Oddly enough, I look forward to these quarterly appointments. The ALS clinic at the University of Washington is such a positive place. We, the patients, are treated with the respect that we used to get when we were whole, non-disabled persons. (you know what I mean ). I touch base with a caring team of doctors and nurses who know my history and really know this rare and deadly disease. Well, the planets didn't align or maybe it was just a wild day of traffic after the storm of the season. Either way, I missed my appointment

A lady died tonight. Her death was not expected. Her death caused a stir. My nurse was her nurse and I can tell you that she sobbing. Distraught and barely holding it together, she gave me my medications. King County Rescue arrived with the coroner in tow. It was easy to piece together that something big occurred. The family arrived and those two big boys were red in face. They left with her belongings. So sad. So tragic but hopefully she's gone home. I said a prayer for her as the funeral home wheeled her earthly body out of the building.

The majority of my fellow residents at the nursing home are in their late 60's on up to their late 90's. The median age is 76, I think. Some of the residents have Alzheimer's or dementia of some type and many residents are not capable of meaningful communication. Some people are transient, meaning they are here to rehab and move on. A few are sent here to die quickly. That's sad seeing anxious, crying, greif-stricken faces. Some residents are simply non-social for whatever reason. Consequently, meaningful conversation only occurs between myself and caregivers, friends, and family (in that order), Rather than fellow residents. Oh, I attempt conversation all of the time. Mostly, it's an exercise in futility but I try anyway. The few that are conversant can no longer understand me since my mouth and face muscles weaken. It's a tough reality. Luckily, I can still smile and say, "hello", "hi", "bye", and "no" when I need and

It's amazing all the things I worry over in the course of the day. Some worries seem so legitimate, such as when certified nursing assistants (CNA) manage to hurt me when performing routine caregiving, such as transfers into and out of bed or when they are changing my brief (also known as an adult diaper). (Yep, I wear them, laugh it up now and get over it. It's another grim fact of life when one lives in a nursing home. It's not that I'm incontinent but the aides are spread so thin that they cannot whisk me directly to the toilet... ). Anyway, doing normal things can be painful when aides are poorly trained or merely ignorant of the physical deterioration of ALS. I worry that I'm not getting enough liquids in a day to stay hydrated. I should have 3000 ml/day. But I'm lucky if I drink 500 ml. My supplements are administered through my feeding tube with water. I am not sure how much plus, I sweat...A LOT...I'm in an overheated environment and I sit in a pow

I did it...I pulled the trigger on a purchase I've been denying myself for years. I bought a Keurig and I flat out refuse to feel bad about it nor feel guilty for it. My husband made me postpone so much of my wants and desires in my life. I cannot blame him entirely. I blame myself for working so hard for his approval. I knew it made good economic sense when I wanted to buy one when they first came out but he thought it frivolous. I argued the savings versus buying prepared drinks at Starbucks. He argued that I should give up Starbucks altogether and I tried. Instead I used a donated espresso machine that was tedious and time-consuming and added my own cream and syrup. This was a poor substitute that I eventually abandoned in favor of the convenience and joy of hitting my local Starbucks. Again, with receipts in hand and numbers crunched, I had proof that it was a good decision for us. He deflected saying we would shop different brands. We looked at the Nespresso at Sur La Tabl

The classic David Bowie rock ballad is running through my head as I sit in my power wheelchair with my v-pap strapped to my face. I mean, how space age is this?! And I'm communicating with human beings all over the planet from my Tobii. When I was a kid, the Viet Nam war was regularly on the news.  The Bay of Pigs was a reality. There was no such thing as a reality shows. Astronauts walked on the moon and we watched it on TV. We stood up at the beginning of class and put our right hand over our heart and pledged allegiance to the flag and the United States of America. I watched The Nightly News with Walter Cronkite, Dragnet, Lawrence Welk,  Hee Haw, and Laugh In with my grandfather. I watched Sesame Street, Mister Roger's Neighborhood, the Brady Bunch, Partridge Family, Wild Kingdom, Disney, and lots of cartoons. With my mom, I watched Dark Shadows, Peyton Place, Days of our Lives, Twilight Zone, and movies, especially scary ones. You know what's scary? All the things

.One of many in a classroom full of fresh-face kindergartners. Reading about Dick and Jane and Spot. Raising our hands to answer questions on what we read. I know the material, reading comes naturally, my people read to me. Some kids struggle, having to sound out the words one letter at a time. It's got to be hard, I just want to do it for them. All of the sudden, I get a familiar tingle. Oh no! I have to go. I raise my hand. But there's a sea of hands up in the air. Some kids are practically jumping out of their little wooden chairs in an effort to get chosen to give the answer. The questions are so cinchy, as we used to say. But, I'm back several rows and she can't see the quiet little new girl. I tuck my leg up under my bum, making me taller but allowing me to remain obediently in my seat. I really have to go. What do I do? I'm torn between bodily necessity and having to be a good girl. I must be a good girl. I can't make anybody angry. I must obey. My litt

Had trouble getting to my blog today. Got up late, just in time for lunch. Got my "office" set up then logged in. (an everyday challenge) Just got to Blogger when I was pressured to go to the diningroom. I know better than to go in before 12:30 because I just sit there watching trays get passed and other people eating. Lunch gets delivered hot and on time but it cools before I get to it. Hot food is a thing of the past. As is healthy food. I get bored and leave my table. I get reeled back in but a pungent aroma hits me from the next table over. Oh! No way! I can't eat next to that smell and off I go again. I tell the aides what the problem is and none of them understand me. What a waste of time and energy! I head back to my office but see a nurse that understands me and I get my point across. The offensive odor gets neutralized and I get to eat my cold stew at 12:30. After lunch I get back to my office, get Blogger back up, and my massage therapist shows up. Now, I am

Omissions are lies. And my husband is up to his old tricks.  Ever since I became ill, he has lied to me, lied about me, and failed to pass on vital information. This time he weasled a real estate power of attorney out of me to put our properties up for sale. He was supposed to get comps then list the property for sale. We talked about selling to his brother but I stipulated that he needs to pay market value. He had agreed that we were not going to fire sale the property. Imagine my outrage and sense of betrayal upon finding out that he sold the property for about half of it's worth to none other than his brother! When I questioned him on the matter, he played it off like it slipped his mind to tell me. But I knew that was baloney. Then he wanted to know who told me. Yeah right, you forgot. Then he said that he was just shielding me from the unpleasantness. I called him on that one, too. I asked him how much. He said $40,000.00. I asked him where it went. He said he put it toward

I am grateful for my family today. My husband shows up practically every day with prepared food, snacks, or items I need or want. Some days he shows up empty-handed, but I guarantee it is not a disappointment. His visits mean so much to me. Just sitting and talking with my mate, lowers my anxiety, makes me laugh, and makes my life with ALS bearable. He reads books to me. I listen to audiobooks every day but that is a solitary activity and I love the sound of my husband's voice and he chooses different books than I would choose. He doesn't just show up. He's also engaged and invested. Together, we draw a crowd. Other residents join us or sit on our periphery. It's fun. Hell, we're fun! At the end of our time together, we go to my room where he flosses and brushes my teeth, cleans my ears, plucks stray hairs, massages pain-relieving lotion into my contracting hands and/or straightens up my room. My sisters visit separately and their visits have different flavors.My