IntrinsicTina

Pleased to report a good save and measurably improved response to suctioning needs. As usual, adult diaper change spurred secretion movement; I was surprised when the patient care technician (PCT) Calmly asked me if I needed suctioning. Upon my ascent, she told the other PCT to pull the emergency cord, and turned on the suction machine. She even did a decent job removing most of the secretions. The charge nurse promptly responded to the call, backing up and taking control of the suction wand.  If I may, my only critique is that this particular nurse is the only critical thinker who considered gravity when suctioning. I was rolled onto my left side, thus the secretions were pooled in my left cheek, not the back of my throat.

Contrary to what I publish to my blog, I want people to know that I am not unhappy. I laugh often and love much. I do enjoy Life, despite my circumstances. Having ALS is a bad break, but I should hope that it doesn't define me. I've had some incredible experiences that I doubt I would've had otherwise. I've rubbed elbows with some good people. I've gotten to know people in a unique way. I've been a part of purpose much greater than myself. I've been able to contribute to the future.  I learned to love Football way too late in life!I wish I could have gone to a game and watched the Seahawks in person! I adore all of them but mostly, Richard Sherman. I've really enjoyed watching the games with my husband.

I'm better about noticing when I need to use the cough-assist and suction machines. When I indicated that I needed them, the new nurse had no idea where to stand in relation to the equipment. The charge was not taking control, in my opinion, leaving me to use my head and eyes to motion her to assist. I got panicked in the face of malfunctioning equipment, yet again, and ordered the charge out. (An order that he, wisely, disregarded. I still had secretions that needed to be dealt with.) However, the new nurse, mistakenly, thought I meant for her to leave, so she did. Oops! Another nurse filled her spot. Lucky for me. So, the new issue is that somebody is fiddling with the dials on the cough assist machine. Really! As if I don't have enough challenges. Furthermore, the nursing home does not have any idea what the settings should be.

23 23 Deep or shallow? Do I go deep within my soul or stay topical, light, and shallow? La, la, la, I love having access to audiobooks! Although having ALS has left me a quadriplegic and confined to my bed and my hospice room, I take flights of fancy and live alternate realities through the imagination of others. Then there is my reality which changes daily. I have the mindset that it is what it is, and I have done all that can be done, therefore I shall get on with it and be as happy and healthy as I can be. Take today, a fairly typical day in the life, I've been even keel, status quo. I had a good visit with my husband, no big blow-ups, a bit of mental tug-o-war, as dysfunctional, but loving couples do. Same with my caregivers, no big deals, some capable, others not so much. This night I request the shower chair which doubles as the commode. I get two of my favorite caregivers, one pretty efficient, the other an eager relative newcomer. I can appreciate the value of trainin...

It's important to me to report that I had another respiratory issue and was well taken care of. The equipment was working properly and Sara was on duty.

I continue getting sass from one particular caregiver. He says, "You need to communicate with us." he continues to completely miss or dismiss the concept of I would if I could . It is part and parcel to having ALS, I am losing my ability to communicate and it is his job to assist me. Part of helping me, like it or not, is to learn my routine and anticipate needs, when possible. He misses the fact that I'm failing more every day and night time is when I'm weakest. It is extremely insensitive and arrogant to expect me to cater to his needs and expectations. Pushing me to repeat words or expound on a simple one word suggestion is physically taxing on my system, adding stress which further depletes me. Cuing is supposed to be caregiver's domain, not the patient's. Here is the situation, I am being changed. In the midst of the action, as seems to be his practice, he is sidelined asking me trivial, meaningless, but energy-sapping questions. Do I want my legs raise...

Checking in to document yet another fail on the respiratory front. During a brief change I needed suctioning. This happens quite often and it is always an exercise to get the patient care technician (PCT) of the day to understand me and not turn me on my back. The PCT on this day used the alphanumeric board to determine my need. Thank you Sophie! She, correctly, pulled the cord to initiate a staff emergency. Nurses answered the call promptly but were thwarted by another machine failure. The suction machine failed to suck! You cannot make this shit up! This machine fails 7 times out of 10. At what point is it considered negligence?! Is this how it is supposed to be? Obviously, I lived, for I am on another rant. The mucus secretions pooled while I lay on my side and Sophie cleaned them out with a toothette. I don't get it.

Managed care, do not get me started. It is the bane of my existence and my savior. If quadriplegia has curtailed my activities, and it has, then being in a home has curtailed even more. I've had to dumb it down and set my standards low. Gone, are the halcyon days of getting in my wheelchair to go for a stroll or sit in the sun, or even sit in the sun room. Neither the nurses, nor patient care technicians, know how to put me in my wheelchair. Seriously. My chair has head controls and it is a bafflement. Most caregivers don't even realize I have head controls. First, they hit the left head pad when they lift the armrest which turns the chair on. Next, they sling me over and place me in the chair. The problem? My head, naturally, rests on the headrest, which accelerates and drives the chair and is beyond my control. Running over a caregiver or running myself into an obstruction are very real consequences of their ignorance. What could be worse? The caregivers remain clueless abo...

Deja vous. Last night I had an attack, an attack of glue-y mucus that tried to drown me. I have ALS, advanced by time, and thus, suffer from the more distasteful ravages of the disease, debilitating muscle spasms, quadriplegia, and excessive mucus secretions. In a moment, I went from relative comfort to fighting to clear an obstruction from my trachea. No, I do not sport that appurtenance. This time, I had competent caregivers, adept at using the cough assist and suction machines, and the cough assist machine failed. Somehow, the dials got moved and I didn't have the air pushing in. (Try explaining that while you're struggling not to drown in snot. I did.) Luckily, we got past that hiccup, and got the obstruction clear. I ended up needing to give those machines a workout several times that night.What was even better was being aided by a critical thinking nurse, who asked good questions to determine the cause of the unusually thick mucus. He discovered that I'd become de...

1 Overwhelming frustration, It is what I feel regarding life preserving efforts on me. ☹ As a person with ALS, I have respiratory issues. As a woman who loves her life, and doggedly clings to it, I employ the use of the cough assist and suction machines to expectorate and remove secretions, when necessary.  (That is a sanitized way to say machines suck snot from my throat and mouth so I can breathe. Gross, huh?) ALS ain't pretty. I am in my fourth year living with ALS and I feel the progression of the disease . Okay, I probably have made that pronouncement before: when my fingers triggered, froze, then failed; when it crawled up and stilled my right, then left arm; when I stumbled and fell, then went from cane, to walker, to wheelchair; when I was forced to use an adult diaper; when I was forced into a nursing home; when I was demoted to advanced dysphagia diet; when my neck weakened; when it became necessary to sleep sitting up; when I almost died of respiratory failure November...

I have an untenable situation; some of my caregivers do not realize how limited my speech is, how difficult it is to pronounce consonants, and thus limit my vocabulary. Add in my diminished lung capacity, further limiting available vocabulary; three or more syllables are simply not possible. Therefore, I must be concise and to the point. In fact, it is better not be relied upon to provide explanations. And yet, it happens daily and several times per day. Despite asking for yes or no questions, I get choices. Do you want to begin with soup or eat your entree? I cannot pronounce "soup" nor "entree" Nor can I physically point. Now, imagine the caregiver who plunks themselves down and asks, "What would you like to eat?" Further, imagine that I'm having an issue...my brief (adult diaper) needs changing. ...My speech generating device is malfunctioning. ...I cannot breathe and need suctioning, or need the cough assist machine, or to be,  simply, repositi...