Skip to main content

Fighting for my Life

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 the number danger I face. Repositioning me requires a plan executed quickly and efficiently. Paying close attention to my breathing. I cannot stress that emphatically enough!

When I'm not in respiratory distress, my breathe is quiet and regular. I am able to vocalize in my dysphasia-diminished manner. When I'm having difficulty, I huff and puff like an old bear. Vocalization is clipped and sounds angry. (However, the anger is actually fear.) I may opt not to respond what I deem as non-essential questions (not out of malice but to conserve my life energy.) When I'm having escalating or continued difficulty, I yell for all I'm worth. It expends precious energy but I'm in "fight or flight" mode and I'm beyond vocalization and meaningful communication. Telling me to calm down is not productive. If I'm looking "daggers" at an individual, I'm percieving that person as a direct threat to my life. They are making the wrong decisions and harming me.

What can be done to prevent these traumatic episodes? To, indeed, save my life. Be extra vigilant to turn me completely 90-degrees on my side to allow diaphragm expansion. No half or partial turns. They push air out of my lungs. Do not leave me flat on my back. Ever! When this occurs, I AM SUFFOCATING. My tongue is swelling, my head is pounding, my adrenaline is pumping, and all my energy is funneled into making my diaphragm and lungs pull air in and push air out.

I beg of you, Do Not end my life prematurely.

Do not rest your arms nor lean against me. I cannot fully inflate my lungs nor lift my diaphragm. Hold me with both of your hands. One lightly on my shoulder, the other on my hip. Do not ask me non-essential questions. When necessary, form a Yes or No question. Then I'm not forced to expend energy trying to form words when the musculature of my mouth refuses to work. (This is what ALS-induced dysphasia does.)

Please remember that my body is impaired but my brain is not. I'm in here. I love my daughter, my husband, and my family. I've come to love some of my caregivers as friends and some as family. I'm hoping to see my daughter marry and smell the top of my grandchild's head. God willing. God willing. God willing. .

Comments

Popular posts from this blog

Eleventh Heaven

Getting right to it, Tina's Twelve Days of Christmas nears it's crescendo:  ♫ On the eleventh day of Christmas, my true love gave to me... eleven Trophy Cupcakes, ten Snowman bright lights, nine Fran's dark chocolates, eight Christmas crackers, seven cotton candies, six bags of kisses, five red heart ornaments..........four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. ♫ I have to share with you, the effort my husband is making. He brought me a few different choices for the eleventh day of Christmas: Eleven candy canes, eleven Lindor truffles, and eleven Trophy Cupcakes. Of course, I cannot possibly eat all of the nummy goodies, so my caregivers are, deservedly, getting tasty holiday treats.

More Lies

1 A lot of emotional drama has happened with me once again. First, I went ballistic when my husband sprang another nasty little surprise on me. He told me in an offhand way that he would not be visiting me over the weekend when he was aware all week long that was the case. That was the culmination of a month of nasty little surprises  I got all month long from my conniving husband. I figured out that after he talked me into a limited power of attorney for the purpose of listing then selling our properties, He sold property to his brother. After questioning my husband he feigned forgetting to tell me that he sold some property to his brother. He also told me that he did not list the properties per our expressed verbal agreement. Additionally, he sold a house and four lots for about $25,000.00 UNDER market value. Within the next few weeks, he tells me (after the fact) that he sold our retirement home on a contract basis (again for less than market value) to his brother's daughter...

I Remember...

I remember catching fireflies,  putting them in a jar, as a girl of five. I picked pears off a tree that overhung an alleyway on my route home from school, then enjoyed the forbidden fruit. .I had a golden cat who chased a gray mouse through our living room sending my mother, 3-year old sister, and me screaming atop the sofa and chairs. We lived in a farmhouse and I watched Romper Room. A daddy longlegs skittered across my dirty kid legs as I teeter-tottered on a broken kitchen chair back. I played grocery store and laid out a bedroll for group nap time in preschool. We lived in an apartment attached to a bakery. My maternal grandparents visited and a photo was snapped. Grandma held Dawn and Grandpa held me. I held Grandpa's chin. Walking through the back of the flour-caked kitchen, I saw scrumptious pastries and colorful toys stuck in the cupcakes with my hungry kids eyes. We lived in a two-story apartment building next door to a large farmer's field.  That field was my...