IntrinsicTina

It happens all the time, I'm wary of sometime and on-call  staffers. They  "think" they know how to care for me. They do not. Even though I'm reassured by the full-time staffer that they will help them.They do not. So I am being changed, Turning me over onto my side, the on-call nurse doesn't turn me using my hip and shoulder, instead she rests her right hand onto my flank and ribcage. Due to dysarthria, I've lost the ability to speak consonants and rely on caregivers to learn the few words available to me if I'm without my speech generation device (SGD). I tell her "Off" and she takes her hands completely off of me and uses her body to block me from rolling off the bed. The other caregiver doesn't correct her for either move which impedes my ability to breathe. With ALS, I'm losing muscles daily, as this occurs, others take over. I used to have muscles that lifted my chest, allowing me to breathe, now my belly and neck help me. I'

I cannot stress this enough... If I do not want you to touch me, by God, don't touch me. I must be allowed ultimate dominion over my own body.

ALS blesses me with myriad muscle spasms; some playfully jiggle a given body part, others painfully seize and wrench. In the early days, I was the recipient of more than one spontaneous orgasm, when my clitoris was jiggled. Regrettably, those freebies were shortlived and few in number. They were, by far, the most pleasurable and the most memorable. Most often, my fasciculations, the technical medical terminology for these muscle spasms, range from unnoticeable to annoying to painful. Luckily, for me, the painful ones are short in duration, but they can be quite acute. For example, charlie horses, or muscle cramps in the legs, are intense and used to awaken me screaming.Now they are de rigueur. Since I, literally, cannot move a muscle voluntarily, I can only breathe through the pain. Another troublesome spasm hits me deep inside my left ear, it's what I imagine, a red, hot poker feels like being plunged into your ear. Yes, I actually get the sensation of extreme heat to enhance

23 I'm so very weak today. I can barely keep my eyes open. I awoke to find my husband napping in the spare bed in my room. A nice surprise.But I struggled out of sleep stupor at the

I have been violated. Again. My trust betrayed. Again. This time, I was in the shower, talk about vulnerable! I have late-stage ALS, if I may borrow the terminology. ALS is not measured in stages, to my knowledge, and I've made it my business to learn all things ALS, for the past four years. ALS has taken away virtually everything a person can do, and almost everything I am. I'm quadriplegic. And I've lost the ability to speak. The greatest loss has to be speech. Because even though I have the best available speech generation device, which allows me to use my eyes to type, I no longer have the energy to get my point across to caregivers in time to do any good. I even lack the energy to communicate with the management to report abuse. Back to the shower incident. I'm so happy to be getting a shower. I figure I'm going to get a good one because one caregiver was a former shower aide, and she has showered me before. Furthermore, she is going to teach another how

What a difference good caregiving makes! I'm not energy-drained, over-taxed, nor overwrought. I'm not injured, not under-medicated, I haven't been talked down to. Good caregiving makes me glad to be alive. I want to be alive. I should not have to fight my caregivers.

I am an undesirable. I have ALS. I take up way too much caregiving time. Oh, doubtless the caregiving industry wants the dollars we generate to fill their coffers, but we are a losing proposition. I've been in two managed care facilities now, and I can tell you stories of overpromising and underdelivering. Mismanaging, getting lost in the system, ignored call bells, not bothering to learn the disease process, and critical think solutions, train carestaff to the deficits. More than half the staff of this well-rated skilled nursing facility, could not verbalize what ALS is, I venture to say. And they are the best thing going for the ALS patient. I've been in residence for two years now, and the caregivers that attend me day in and day out, do not grasp the concept that I am safer, from a breathing standpoint, rolled up on either side, rather than be positioned flat on my back, where I'm subjected to the weight of gravity pushing down on my chest. For the first year, thi

If my caregiver doesn't know how to react to a slight choking incident, I refuse to allow them to feed me. If you had a DNR Do Not Resuscitate order attached to your name, Wouldn't you? Furthermore, if you have a choking incident, the Powers That Be are eager to downgrade your diet. Yeesh! Does slurry sound good to you? (Involuntary shudder) If a caregiver doesn't know how to properly turn me, clean, or transfer me without obstructing my breathing or endangering me in some way, Why would I allow them to help me? It's my life that I'm PROTECTING. I want to live.  I dismiss a lot of caregivers from my room! A Helluva lot.  Nurses and caregivers, alike, must be able to communicate with me. I have a major speech issue, therefore, they should be able to work a rudimentary alphanumeric communication board or setup my communication device, or have a basic understanding of how it works. And yet, this is a major lack. A major lack and the root cause of all the safety iss

As a kid, I loved riding in the car, especially long trips; roadtrips with my grandparents were the best. On these trips, one was sure to encounter big rigs, coated in road grime, with Wash Me written with an jokester's fingertip. I am the big rig. I'm miserable, again, and not because ALS.  It's because I'm in a managed care facility. You could say that the scrutiny is on other things, not on whether or not I get bathed. In a nutshell, I'm dirty. My skin itches and hurts. My scalp itches, burns, and hurts. I'm supposed to get bathed three times per week, and I used to. But with the last major staff turnover, the habit, abruptly, ceased. I don't understand. I wear adult diapers and take daily bowel medications; thus I have an added need for cleaning. And I sweat. But, somehow, for some reason, I am no longer a priority. I'm an option. They do not understand the personal cost to me when I do not get a bath or shower. I'm certain that if the sear

I've been browsing my own blogposts to see what I was up to back in the early days of my blog.  What I noted most was my use of photos. Unfortunately, I am unable to take new photographs, but I can access the ones loaded in my Tobii. This picture of a dove perched atop a very old adobe wall, was taken in Oceanside, California at a mission.  The Old Mission San Luis Rey de Francia, built in 1798, otherwise known as the King of the Missions. This beautifully weathered wall, located south of the mission, in the Lavandaria. I've been particularly proud of the peaceful, warm nature of this photograph.