IntrinsicTina

Bad news. One of my favorite caregivers is leaving Bailey Boushay House, and by extension, me. Assan Jagne, originally from Gambia, is a very tall, very black, imposing man at first glance. But, if you stop there you'd miss out on an extraordinary human being. I must admit that I was  more than a little apprehensive about being cared for by him. For one thing, I dreaded having my more intimate needs attended to by any man. I was terrified at the prospect of him. How utterly fear-based, sexist, and racist of me! As he did his job, I witnessed his gentle, self-effacing humor, his intuitive ability to really help, and the love that emanates from him.  I learned that he helped a friend of mine who also had ALS. As a result, he seemed to understand my particular needs as a spirited woman with ALS. I struggle to find the appropriate words to express my gratitude to God for sending me this lovely person to teach me valuable lessons.  I will feel his absence. I will strive ...

Writer's block. So much to say but how do I say it? Melancholia. I was ready to go on time. Up and at 'em at 0745. Shower accomplished. Appropriate wear for a choir concert held in Shoreline. I shouldn't care but I do. Snapped out of my funk when I chose to attend a music group. Rousing renditions of "Somewhere Over the Rainbow" by Isreal "Iz" Kamiole and Cassidy and our own, Nadine set the tone. We "sang", Nadine carries the song, Jola soloed, I'm the human metronome until I tire, Trish puts in a good word, and the volunteers join in. So, we sang "Stand By Me", "Lean On Me", "Under The Boardwalk", and "Sunshine On My Shoulders". And Nadine improvised a personalized summertime blues, including all of us. One cannot help having their spirits bouyed to a better place. One good decision leads to another. Next, I was blessed with Elizabeth, a sweet volunteer, who read "Awakening the Buddha Within...

I'm having trouble making another difficult decision Who am I kidding? I don't really get to make decisions anymore. I get whatever anybody is willing to give me. Why the pessimism?  I'm hurting again. Nothing has the ability to cause me more pain than strife with my husband. Especially so, these days. Living isolated, away from family and friends, was never in my plan. Frankly, it's pretty damned awful. Being so isolated, my emotional dependence upon him is magnified. This is a mistake and I know it.

Before it reaches crisis level, I need my caregivers to be aware of my respiratory needs. Currently, they enter my room and apply Purrell antibacterial to their hands. Great practice for infection control! Bad impact to someone with limited breathing abilities. The compromise is to rub in the antibacterial thoroughly prior to entering the room. That way, the fumes are minimized. My speech therapist also said that soap and water is another alternative. I agree. Other irritants include perfumes, sprays, and powders. Anything that emits a chemical or is propelled into the air can steal away my breathe. For that matter, even too many flowers can leave me struggling to breath deeply. I've had to ask that my room be mopped only when I'm not in it. While I love my air freshener, Febreeze, it must be used judiciously; aiming toward the floor. Talc or powder must be shaken into caregiver's hand, away from my face, then applied to me. And, please don't use these admission...

Memorial day weekend and I got out of the home, and out of my current reality, so to speak. The forecast was grim and the pregnant, pewter clouds echoed the same. Stepping out in faith regardless of a plan, worked. We planned to visit MOHAI over the holiday weekend but couldn't get it together early enough to justify the $17 USD per person entrance fees. Oh, MOHAI is the Museum of History and Industry. Located in Seattle, Washington on the banks of Lake Union in the heart of the Mercer Mess. Because my husband is easily frustrated by Seattle, by traffic, by my disabilities, by life in general, we decided to go on a dry run.Incredibly, this ended up being the main attraction. This was the same weekend for the Folk Life Festival, my first choice, so there were no crowds to contend with. What we found was easy parking for the handicapped; wide, clean walkways; open space, waterfront access (even for me); interactive fountain; city, lake, and Space Needle views; bright orange angul...

My husband told me that I got a private facebook message from my former best friend who has not spoken to me in 5 years. Then, he wouldn't read it to me, babbling on about how he hates facebook and doesn't know how nor like to use it. Now, I currently cannot use facebook through my Tobii SonoKey interface nor can I access it alone in any form. I get incredibly frustrated when he is my only gateway to do something that is so important to me and he lames out because he doesn't want to or fains ineptitude to get out of it. I wish I had more options and didn't have to rely on him.

1 Reading, or more precisely, being read to, by a volunteer-turned-friend, "Awakening the Buddha Within", Is having a profound effect on my understanding and acceptance of myself in life. While I've found some degrees of spiritual enlightenment on my path since discovering Alcoholics Anonymous twenty years ago, this book is jelling together my understandings of principles and my life experience. My recall on step one is sketchy, although I think I understand more of why I "failed" to achieve more traditional success during my lifetime. That is not to say that I was a failure. I was not.   I was not...So many things. I held a lot of jobs throughout my lifetime, the longest spanning four years working for a chiropractor as his assistant at a pivotal point in my life. My highest career achievement was working my way up from temporary office worker to Executive Assistant to the president of division of a global .aerospace company.  My most formative and fun jobs...

ALS Association meeting every third Wednesday night of the month is the port in the storm that is ALS. I've been attending these sanity-saving gatherings since my diagnosis in 2012. Throughout the years I've been in these get togethers, meeting people with ALS, their families, and their caregivers, I fail to understand the PALS who don't tap into this valuable and free resource. .Don't get me wrong, I'm not judging. To each, their own. I just do not understand. Oh, I understand the fear of the unknown. The fear of looking "the beast right in the eye".  If you're anything like me, you never knew what ALS was, let alone met somebody with ALS.  If you're anything like me, you never knew what ALS was, let alone met somebody with ALS. Or you associate ALS with Stephen Hawking and God knows, you don't look forward to looking like him! Sorry Stephen. I'm no prize anymore, either. But, what I get is invaluable...Understanding. I get this in n...

I love my husband. I know that I bag on him a lot and, frankly, he deserves it. Everything I post is the truth. I would not ever, knowingly, post a lie. However, if this the only source of information you use to form an opinion of my husband, then you're not getting a true picture of the man. The man that I fell in love with, fell for me first. He spent a whole night buying me "drinks". (Orange and cranberry juice over ice with a splash of pineapple juice) He was chagrined to learn that he paid alcohol prices for non-alcoholic cocktails, or "mock-tails". He was amazed at how well I handled my Harley and danced after so much alcohol consumption. (Clearly, he was accustomed to a different kind of girl. The kind of girl I was determined not to be ever again.) This man matched me dance for dance though he was clearly outmatched. He gave it Hell though and he was cute doing his damnedest in his unique custom leather chaps to "More Human Than Human " by Co...

How many employees does it take to finally get my remote reprogrammed? It's been three months , multiply that by one employee per day (I'm being generous as it's been as many as five in one day and others I just opt not to screw with it.) you do the math. Just emphasizing a need for initiative for people with limited communication skills. See a problem, find the permanent solution, not just the quick, temporary fix. Recurrent problems waste precious time, energy, and frustrate the patient to no end, having to watch the same ineffectual dance.

Exhausted. I'm so tired. Eyelids are heavy. Leaden. And yet, I have not been awake much today. This is not normal for me.

I drank coffee today. Maybe that's a mundane detail for you but, for me, it was an occasion. I have choking issues with drinking. In fact I gave up my one-a-day Starbucks habit over two years ago. Not because I wanted to but because it became necessary. You don't have a lot of opportunities to visit your friendly neighborhood Starbucks when you're locked down in a nursing home. Alone. Without anyone to help advocate for my rights. Whew! This is touching on heavy stuff...Another day....

Don't get me wrong, I love it here at Bailey Boushay House. By and large, I love my caregivers and I really appreciate the difficult job they do. I cannot imagine working in a hospice situation. What compassion they have! What courage! Before I was diagnosed with ALS, I was afraid to spend time with somebody that had a potentially life-threatening illness. I had compassion but I lacked courage. Courage to accept the unacceptable...Death. The thought of losing somebody that I've come to know or worse, come to love... Well, it just rears up my separation anxiety to vibrate. Actually, I just mis-spoke...I did have a friend who ended up with breast cancer, and I did not run. I did support her by staying friends, offering encouragement, being there for chemotherapy, being present for her mastectomy, offering to take on her beloved dog should she not make it. I knitted chemo caps for though she opted for ball caps. I knitted "Boobie socks" in breast cancer pink, that I ...

The problem is caregivers that leave me on my back too long, don't support my arms when I'm between 45 and 90-degrees and lift the bed legs up. They over challenge my diaphragm and lungs. Gravity pushes down on my diaphragm. (I'm not strong enough to fight against gravity anymore.)  Elevating my head without, first, boosting me up in the bed, forces air out of my lungs. Folding me up, or "taco-ing" me, in the bed, by elevating the legs, forces even more air out of my body. Then, when four people stand around looking at me, "waiting for me to my calm down", feels like murder. I cannot get enough oxygen into my body. How long can you survive being "burked"? They say that new care directions are in place. Indeed, this is noticeable in some of staff and I appreciate the heightened attention to detail. However, there remains individuals who remain unchanged and that is frightening. Particularly, when I get two at the same time. Then, I am forced t...

A nurse put my bed at 90-degrees without the appropriate pillows stacked under my arms to support my torso musculature. Then she badgered me to tell her what to do. I cannot tell them what to do when I'm suffocating.   Everybody thinks they know the problem and solution. And yet, none of them have had ALS! Funny how they football the whole issue back on me. In psychology circles, they call that behavior "blaming the victim". What's worse about this is that there were additional participants. Another nurse and two PCT's. Their traditional approach to care is not working with me. It's harming me. They are treating very human reactions to my safety as a behavioral problem. They all gathered around my bed while I'm struggling for air, telling me how they want to keep me safe when, in fact, they are watching me die. It's laughable if it weren't so damn tragic! I was reported as "trying to throw myself out of bed", when in fact, I'm...

As I grow weaker, procedures and caregivers are not evolving fast enough which threatens my safety and my very life. I've had four incidents over the last month or so which have left me distrustful of many of my caregiver's abilities to give me care without killing me. Of course I do not believe they are out to get me but I do believe if they do not fully understand my particular disease process They WILL make a mistake that will result in my death. I'm not posting to denigrate the wonderful people who work here. I learned very quickly the giving and caring character of the people who work at Bailey Boushay House. They are the closest thing to angels on this Earth for me, a woman whose body has been ravaged by ALS. Respiratory is the number one issue. Keeping my airway clear is paramount to my survival. I am aware that one day soon I will succumb to this disease. However, I really really want to live as long as I find joy and purpose in my life. Repositioning me is th...

Started therapy today. So grateful for somebody to talk to. Somebody to take the time to "listen" to me today which requires patience since my answers come in the form of painstakingly slow keystrokes on my Tobii or by referring to my blog posts. Not many people have that kind of patience. Today, I feel some relief. She asked some questions and I found my own answers interesting. When asked about how I'm able to forgive my husband for all of the lies, abuse (both mental and physical), the abandonments, the exclusions from family life, giving away my property without permission, for misrepresenting the facts to my family and his, friends, police, EMT's, social workers, doctors, nurses, and PCT's (CNAs) to further his own interests?  I said, "God. Knowledge of psychology. Addiction behavior. Dysfunction. Self. My personal search for answers for my own unacceptable behavior."

I had a dream, a very rare dream. I'm convinced this is a first for me. I've dreamt of my first husband before. And I've dreamt of my current husband before. I've had dreams that brought my first husband back to me. No big deal. The subconscious mind will do some strange things and to be expected. However, they have never gone here before. A little background... I absolutely loved my first husband. Even though it was likely my own immaturity and insecurity and burgeoning alcoholism that caused the tipping point that ended my first marriage, I never fell out of love with him. He and my daughter were my whole world. They, especially he, was my identity, my hopes, and my dreams. It's devastating to lose all that you are, all the good that you've been, and that you'd hoped you would be, all at once. I was unprepared. I loved who he was and how he moved through life so confidently. After I lost my marriage, I felt hopeless, unloved, and unLoveable. A series o...