IntrinsicTina

I cannot believe the end has come so quickly. I was stuck in a wholly inadequate nursing home for damn near a year. It may as well been prison. The management was not interested in my well being as much as in the conformity of  their populace. They blithely took away any small freedoms I had in the name of safety. I went from farm fresh eggs to institutional crap. From organic juicing to the cheapest watery flavored facsimiles. The nastiest blandest toughest excuse of food I ever had the misfortune to taste and I grew up on commodities. When I was physically able to manuever my power chair, they slowed it to a crawl. Then they took it away altogether, ignorant of the medical necessity of it. They were ignorant of the PseudoBulbar Affect (PBA) or Frontotemporal Disease (FTD) I was suffering from which governed my emotions. Instead, they would treat me as a child and exert discipline upon me. Wholly inappropriate. I needed treatment and understanding. There was no real attempt to l...

I've been listening to Clash of Kings for about a week. I should be finished but I keep falling asleep and not able to find my ending place. As a result, I heard the same part over and over again. Sheesh! I miss being able to function independently. I'm cold once again alone in my private ICU room. I was warm enough 20 minutes ago when I was being readied for bed. The outside temperature must be plummeting considering the icy fingers reaching from the window wall. Sounds like a nice room, huh? I wish there was a view but I only see the building next door. Going to have to use my call button soon but I hate being a nuisance. There are people who have a shot at life in here.

Tough handful of days... Got real sick, no temperature but could not keep my airway clear. Husband spent hours with the cough assist on me since the nurses at the home are so miserably inept with it. (Not to mention any names, Fatou and Mercedes, and Lore. It may just save a life to have more than one penny anney on-site check-the-box class on the cough assist and bi-pap.)BTW, Lore did not bother attending and I know they had not bothered to train Fatou. The nurse's priorities are distributing drugs and taking blood sugar readings but there is precious little nursing going on. It's a shame really. And I don't want to bag on the nurses. It was the nursing home representative that repeatedly assured me that they could handle ALS patients. They have repeatedly shown me just how incapable of the task they are. They were more qualified to kill me through gross ignorance. Following a protracted argument with the ambulance company about where to take me and my competency to ma...

My relationship with my augmentative alternative communication (aac) device is love/hate. I love that I have an alternative form of communication. I see so many people who have lost the ability to speak due to stroke or TBI (traumatic brain injury) and their communication is reduced to head nods or unintelligible sounds. They are so frustrated. And that single word doesn't begin to cover the myriad of emotions that one feels locked within their body. I hate the pace of the communication. It's molasses slow. Even the patience of a saint would be tried! Caregivers and family often forget that I need time to respond. That I'm not ignoring them. I hate that it is not more predictive. I remember how quick I could type and respond pre-illness. And this is painfully slower. Also hate how slow the processor is. For $22,000 one would think you would get a speedy little processor, predictive text, lots of storage, and MS Word, MS Outlook... I mean really!

I've been slamming on this place pretty hard but in all fairness, there are some high points. I am one of the youngest people in residence at this nursing home. As a result, I attract a bit of attention. I seldom get through the day without a compliment or two. "Hey Gorgeous! ", "Good morning Beautiful! ", "You're so pretty.", I am told. My clothing is complimented on, my taste, my spirit, even my room decor. Never in my life, have I been so scrutinized and yet, so complimented. There's one man here that has called me "a stone, cold fox" as well as a "princess" and even a"Godess". I never got that at home! And the management is wrapping up a remodel that was badly needed and it's actually tasteful. I'm pleasantly surprised. I've had a few good nurses and a few good aides.

ALS support group meeting was today and so was the Seahawks vs 49ers game. What did we do? Support group. But the game was on. I got to watch a whole 5 minutes worth because we had a new person to support. It's what we do. Give back what was so freely given us. Love and support to our fellow ALS sufferer. Our newest member is under the impression that he's got some kind of control over this disease. I can relate. I ate healthy, keeping a journal, even taking up juicing. My ALS still progressed. I went to water aerobics and still progressed. I went to physical therapy and therapy came to my home. I exercised on my own and still I progressed. I went on the Deanna Protocol for two years and still I progressed. I prayed and I've been prayed over. I've been blessed at Assumption Abbey and I've been blessed repeatedly by a Catholic priest and I'm not Catholic! Still I progress. I fight this disease with everything I've got. And still I progress. I wish him well. ...

I'm really sick of this place. It's so dysfunctional. There are so many disconnects. For example, today I'm getting my medication and I notice the concoction is the wrong color. I ask the question and am told the order was changed by "the doctor", meaning the facility oncall doctor who I doubt rivals my ALS doctor, the head of neurology at the University of Washington Medical Center. I've had my Deanna Protocol routine approved by this board-certified physician and taken it for over two years. There is no flamin' way anyone at this place is remotely qualified to overrule me and my ALS doctor. We know this disease. They do not. Anyway, they made the change and nobody bothered to tell me. Typical. Disconnect. The night nurse got the order and the day nurse never passed on the information. Yesterday, the dietician wanted to reduce my folate. I said she doesn't get a vote. The nurse couched my refusal in more diplomatic terms. Oh, and they're so atte...

So very little happens in a nursing home that is special or uplifting. It's a false environment. It's an aggregate of diminished people offloaded by their family's who could not or would not care for them. We are in a for-profit warehouse of death. A place where it is legal to strip us of our identity, our dignity, and our rights. A place where we are vulnerable to not only sexual abuse, but also physical and emotional abuse as well. While I have not been sexually abused thus far, I have suffered many indignities. My privacy has been violated. And I have been physically and mentally abused. I have experienced shunning at the hands of staff members. I am technically continent however the staffing is so lean or inefficient that I am forced to wear disposable briefs and had to learn to use them. I had to learn to defecate in them as well when it took as long as an hour or more to get my call light answered.

I verbally attacked my room mate early this morning. I had a rare night of insomnia and spent time blogging and watching television in my room. I thought about my room mate and adjusted the volume down to what I thought was a low level. Indeed, I had no complaints neither from the aide nor the nurse on duty who visited me on 3 separate occasions during the night and into the morning. This nurse would have no problem turning my volume down if she thought I was bothering anyone. My room mate did not complain nor stir from 11:30 pm until 3:30 am when I used my call button to get my brief changed. When the aides arrived to help me with that change, my room mate piped up saying that she didn't sleep all night with my TV so loud. I know darn good and well that this is her tactic to get her own way. It's unnecessary. And it gets my back up. Therefore before I thought about it I began to argue that she had slept and offered no complaint but forming words and being understood is an ever...

I had a dream last night. Actually, I dream every night and quite vividly, I might add. But last night included my sister, Dawn. That was rare. I dreamed of a glittery party which included our own President Obama. Weird on many levels. Many of her friends attended. It was an outdoor event at the White House. Then it morphed into her friend's backyard, then I was alone in her backyard in Black Diamond. (she doesn't live in Black Diamond.) then I sit down on her lawn and begin pulling up dandelions under a tree. I'm thinking while I'm pulling, reflecting on her life, particularly, about all the times she surprised me. And I'm realizing how unfair I've been to her. And how I've never told her how proud I am of her. There's a lot to be proud of. First, like me, she managed to rise above her heredity and life circumstance and get sober. Not a small feat considering our socioeconomic status (poor white trash), history of abuse, and subsequent low self esteem...