IntrinsicTina

After catching up another PALS blog, it put me of a mind to do what I learned in the recovery community, make a gratitude list. While I've had to endure losing practically everything I've worked for and who I am, I've got a lot to be grateful for. I've been abandoned by my husband, pigeon-holed in a nursing home, and virtually left for dead by family and "friends" but I still have much to thank my lucky stars for. I live in the best facility in the state of Washington for people with ALS. While it's not exclusive to ALS sufferers, it is a place that has the best resources available for our unique and rare disease. My room has a built-in lift (EWC), fresh paint with low VOC, linoleum devoid of stains and rips, a large sunny window, original artwork, tech-saavy appliances, namely a flat screen television with a Blu-Ray Player that is operable by my Tobii speech generating device (SGD). Yeah, I own my SGD! I'm extremely grateful to be able to communic...

I've been disgruntled, as of late, but I cannot tell you the hope I get from getting a bath or a shower. The simple act of washing my hair, a minty refreshing lather gently scrubbing my stress and worries away. Delicious! And using an ephemeral fragrance transports me to a different place and time despite having to submit to the vulnerability of allowing caregivers clean me. When I get my favorite caregiver, my shower is perfection: feet soaking in a basin of hot water; scalp scrubbed and tingling; warm water sprinkling like rain keeping me comfortable and free from body-wracking shivers; My paralyzed body practically draped over the shower chair; soft towels wicking the moisture from my body maintaining body heat. Baths are even better as the moist heat radiates into my muscles and joints. The bouyancy is Heavenly.

Sometimes I'm ungrateful and sick-to-death of being a cog-in-the-wheel hospice resident. Most days I'm grateful to God, the caregivers, and the system that I have good care since becoming paralyzed by ALS. Caregivers tend to my every single activity of daily living; dressing, eating, toileting, rolling over, wiping my nose, you-name-it. If my door is open, volunteers try to entertain me; some activities I participate in, others I avoid. As in any life, each day brings myriad variations of daily minutae. In the course of receiving medications through my P.E.G. tube, I get interrupted from activities, my private space gets invaded (my "PEG" is positioned right between my breasts). Invariably, I get medications dripped, splashed, and dumped on me. Worse, I can't speak intelligibly which leaves me wet and sticky often Since nurses don't seem to notice. Breif changes, many times a day, are usually fraught with annoyances.  During the day there is normally eno...

Fed up. Sick of hearing, "I'm sorry."  Apologies don't erase the pain you inflict on me. You pull my pubic hair. Your nitrile gloves pull the hair from my head. Not once in a while but day in and day out. You turn me in a manner that suits you rather than in a manner that doesn't stress my body. Why won't you use the pad and sheet to turn me as one unit? Instead, you allow my body to twist as you hold me one-handed. How good you are at your job. What part of "my muscles are dying" don't you understand?

I'm so misunderstood. (How cliche', eh?) But, so appropriate. With ALS, my dysphasia has me down to mere words, single word responses and requests that I cannot help but butcher. I feel bad for my caregivers having to discern what I'm saying. It's worse than ever and I'm lucky for what I have. Funny feeling both gratitude and dread. For an example, look at my communication with my beloved husband. Yes, I said "beloved". We've had our issues but, damn, he's still with me, bringing chocolates, flowers, food, and spending time with me. Nobody else comes close to his level of devotion to me. He feeds me, brushes and flosses my teeth, downloads audiobooks, and plucks stray hairs for me. That's devotion. It is not pretty. In many ways, he understands me the best, but he came with baggage. (Didn't we all?) Anyway, if he cannot understand that I'm having an issue and I begin fussing, crying, and issuing terse one-word commands, he's o...

As I mentioned previously, I use this blog for many reasons; today, I need to communicate with my caregivers. If you get something meaningful out of this so much the better. First, you should know that my ability to breathe properly depends upon you. My muscles don't work well. The diaphragm is a major muscle necessary for breathing, and positioning and arm support is essential. The effects of gravity upon my ALS-ravaged body squeezes air from my lungs while the diaphragm struggles to lift and bring new air in. Therefore, whenever upright, my upper body and arms must be supported. Equally important, is not expending energy and breath answering unnecessary questions or by relying on patient to provide instruction. Please learn my routine and read all care plan updates. "Head down". Lean bed down until approximately 45-degrees.  (DO NOT remove pillows beforehand.)  Remove pillows supporting the arms.  Lower bed completely, watching for signs of respiratory distress...

Not sharing much publicly because I've been writing so often explaining issues directly to caregivers. I'm having an awful time trying to get my meaning across. Most people project Their own shit on me. .