IntrinsicTina

A goldfish snatched from it's bowl, writhing and wriggling, silently gasping...

I do not know what to do about my mucus drainage issues. 

Fun Fact: This is the first time, in two weeks, I've been able to feel the backside of my front teeth, due to mucus encasement. It is also the first time, in two weeks, I haven't felt like I was sucking on a snot popsicle. I'm unsure why I had an increase in mucus secretions, but it was pouring out. It was all I could do to keep up. My poor caregivers were put to work scrubbing dried-on mucus from the back and front of my teeth. The effectiveness of brushing my teeth was questionable. Thus, when they freed from their prison, we got right on teeth brushing. Oh, it's the simple things! I wonder, dear reader, if you are repulsed by the more glamorous realities of ALS?

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.

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.

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.

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 23 I was determined to write a blogpost of praise for a change. Then, before I could open my browser and get Blogger loaded, my airway constricted and I battled to keep my shit together long enough to communicate, with my eye gaze-enabled AAC device, that whatever they sprayed down the hallway, was affecting my breathing adversely. (Shitcan the praise.) I'm constantly baffled by the level of ignorance of my condition, by professional caregivers. People who are paid to take care of me, because my husband, who loves me, lacks the expertise. And, by the way, I have better-than-average caregivers coming through here.  Regardless, I struggle daily because they have failed to latch onto the concept of the respiratory piece of ALS. They leave me flat on my back for too long of periods. They ask if I'm ready to go up from a flat-on-my-back down position. (They may as well be asking if I'm ready to breathe.) The answer is  "hell yes!" and "Duh!" Let's...

I may pass sooner than later. I'm having terrible spasms throughout my organs and around my heart. I wake up with my whole body quivering. Much to my dismay, nobody seems to notice.  Fasciculations herald the death of the muscles, in my personal observations. Therefore, I figure I will likely die suddenly from a catastrophic organ failure. I know I'm paralyzed but I'm unnerved when my body seizes. I gasp for air almost every time I'm changed, as I'm being lowered, my body stretches, then my diaphragm spasms big time.  Though I'm gasping, caregivers continue to lower my body to proceed with changing, without realizing it, they are increasing pressure on the chest, with the weight of gravity. Instead, it makes more sense to raise the head of the bed, to reduce pressure on the chest, then pause until the spasm (gasping) passes. This was my state of mind yesterday evening.  Luckily, I got out of my head and shared with my husband and one of my favorite, and mo...

"If you are trying to kill me, raise the head of the bed all the way and hold my arms forward on the pillow. It allows the torso to collapse down and crush the diaphragm." I said this to my patient care technician this morning, following a choking incident. Ungrateful, huh? She's feeding me and I'm an asshole! In my defense, I've had two days of caregiver mis-steps and I'm at wit's end. I get tired of struggling for my life. I mean, beyond the ALS.  While being turned onto my side, I had to give detailed step-by-step instructions (veritably impossible with severe dysphasia), when the caregivers could not understand that I needed them to move my foot for me. No matter what I said nor did, they insisted on repeatedly asking if I wanted a pillow.   After becoming agitated, the charge nurse came to sort out the problem. Unfortunately, I was unable to respond, while face down, neck wrenched.

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...