IntrinsicTina

Contrary to popular belief, I do not save up my gas to sadistically torture my caregivers. I smile when I break wind because I always have. Like any eight-year-old boy, and some little girls, I find bodily functions hilarious. My family was so poor, that our main source of entertainment was each other. When you eat commodities, you get powdered eggs, powdered milk, and a humongous chunk of fart-producing, fake cheese. A quiet night in front of the tube, was, invariably, interrupted by an SBD, or a ripper. What is an SBD? An insidious noxious cloud that explodes inside the nostrils, inspiring either retreat or battle stations. Within our family, it was battle or die. You may be thinking that this was a mere pastime among siblings; you would be wrong to exclude the parental units. Dad was a sneak attacker, waiting until us kids were mesmermized by a television show... Rrrrrrrip! We'd get an aromatic flutterblast right at eye level. Mom wasn't quite so disgusting but neither...

I continue hemorrhaging people. Stephanie, my Stephanie, has given notice of her intention to end her employment. Thankfully, she gave me notice as well. Tears were shed. I totally get that she must do the right thing for her life. Her Baby Girl deserves to have her mama at home on holidays. I will miss the love and her art on the graduated pitchers. I'm not gonna lie, it's hard to lose good people. People who are there, the ones that actually care. The ones who hug and kiss me (with permission) when I cry. The ones I laugh uproariously with; the ones who tell me off-color jokes and don't mind their language. Seems like only yesterday that I lost Meredith to Magic Mike, marriage, and the midwest, nevermore to hear her sound effects while rolling me over in bed. Lisa also went home to the midwest. Don't they understand snow and tornados?! At least my sweet Sophie moved to California. I see much traffic and smog in her future. Man, she's gonna be a great nurse. ...

I think ALS is what one gets when one prays for patience. I don't actually recall praying for patience, but I thought about praying for patience. That must have counted. I number among that neurotic bunch of people who believe we have a daily reprieve on our alcoholism, based upon our spiritual condition. Indeed, I've logged over twenty years sober and clean. I like to say that I learned how to pray in my 12-step program, but that is not completely accurate. I learned how to pray as a child in that rout manner:  God is great. God is good. Let us thank Him for our food. Amen. I also learned to say nighttime prayers: God bless mommy and daddy, and Grandma and Grandpa... My foray into Born Again Christianity, in my teens, left me feeling like a fraud upon my return home to a more hedonistic household.  Therefore, I credit my 12-step program with teaching me the nuts and bolts of praying right. Thanking God for all the blessings in my life. Not giving Him my laundry list o...

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 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...

♫ Ten, ten, ten, ten, let's sing a song of ten. How many is ten? ♫ Like, literally, millions of kids, I grew up watching  Sesame Street and The Electric Company. I watched those programs well into my teens since I was the eldest of four kids. Longer if you factor in seven year gap between the middle children. Of course, I introduced my daughter to my old pals. Is it any wonder that I naturally think of ditties when I hear numerals from one through ten!? Anyway, this is the next verse of Tina's Twelve Days of Christmas...  ♫♫On the tenth day of Christmas, my true love gave to me...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. ♫♫  We are getting ever nearer to the end of the song. Wonder what that husband of mine, has planned for the finale? 

23 The ninth day of Christmas, and I'm peaved. I was so excited to see a Fran's Chocolates bag, and so disappointed to find out that five out of nine were dark. I don't like dark chocolate! I know, I know, I'm terribly ungrateful, and I'm not proud of myself. On the contrary, I'm ashamed of my attitude. I fully understand that I am not owed anything. I know full well the consequences of ingratitude. I am lucky that my husband visits me as much as he does, much less brings me gifts, tacky or not. And still, I was powerless to stop my train wreck to crazy town. Nevermind, that I am worn out by well-meaning caregivers. Some days one after the other, for everything I must do in a day. By the time he shows up, I'm done with patience, tolerance, and kindness. If I ever ever even woke up with any... Oh, admit it, nobody always awakens joyful and happy. I woke up happy then I had a bad hair moment. Here is the most recent installment of Tina's Twelve Day o...

Got a chance to let my party goblin peek out a little at Bailey Boushay House, in Seattle, Washington. God, I love these parties!!! They are a real boost to my spirit. Day in and day out, I am in my room, pleasant as it is, I get starved for new understanding peeps to interact with. Additionally, I need new foods to pass over my bored palate. (Sorry, Daniel, as good as your food is, I am not accustomed to the limits set by institutional standards, for my level of dysphagia.) Thanks to Chef Daniel, I got a chance to sink my teeth into...wait for it...Beef Wellington, Stuffing, Sourdough Bread, Caprese Chicken, Cranberry Pear salad, and Broccolini. Following a fantastic meal, Chocolate Lava Cake accompanied by thick, rich, and creamy Egg Nog. How do I convey the deliciousness? My eyes rolled back and my taste buds practically sang. Mmmmmmmmmmmmm. ♪ Tis the season to be jolly, ate my fill, plus cake by golly. Fa-la-la-la-la-la-la-la-la-la ♪♪ Not only did we dine, we got to listen to...

Pleasantly surprised today, a nurse relayed a message from the Director of Nursing, a change is coming. The other night, a patient care technician (PCT) sprayed a heavy duty air freshener down the hallway...nearly suffocating me. Unfortunately, it was not the first time. I have ALS, amyotrophic lateral  sclerosis, a neurological degenerative disease which has progressed far enough that it has impacted my breathing. Furthermore, I am a quadriplegic, meaning all four of my limbs are paralyzed, and unable to speak intelligibly. I live in a skilled nursing facility, also known as a sniff (SNF). I rely 100% on caregivers to attend to my every need. Imagine my dilemma, I have approximately 10% Forced vital capacity (FVC), Meaning that is all the air that I can breathe, compared to the 110% that I started with. Now, I'm contending with toxic pollutants invading my hospice room. Insult to injury, I cannot escape nor can I tell anybody to close the door and open a window. I'm desper...

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...

Looks like I made it! Another year older and I don't think I've EVER been more grateful or relished the simple act of breathing more. I ate Thai food, dark chocolate mousse, and a killer good Birthday cake! I overdosed on Iliza Schlesinger stand-up. Check her on Netflix! War Paint, Freezing Hot, Confirmed Kills. Did you know that PINtrest is porn for white women?!  Me neither.How about when you applied to become a girl, and they asked what your favorite season is. "Fall. Motha-fuckah!!" She retorts. Because we love #Pumpkin everything! And we lose our shit when the leaves turn.  Babe, babe, babe, babe, babe, babe, babe, babe: Is it cold outside? I got serenaded at midnight, so sweetly. All day I had Birthday wishes, on Facebook and in person. Lynn sang and played harp for me and my family. I got serenaded a second time by dayshift. And Jordan, my sweet Jordan, who comes to crochet bedside for me, showed up to facilitate birthday shenanigans. She's awesome! She...

Care Conference seems like a big waste of time and energy. Not enough follow thru. Email and signs don't teach newcomers nor old timers. Still no emphasis on time consciousness. Whenever I'm changed they ought to hold their breath, or breathe thru a straw with a clothespin on their nose, then perhaps they'll rush to raise my head and get pillows under my arms so I can get a good breath. Regarding the room issues, the overhead light closest to the windows has already been replaced. Never fixed. Always flashes intermittently, which interferes with Tobii operation. Nobody gives whole story. Tell Tate the history. I'm always asleep when he arrives. Same story with the DVD Player, never Finishes downloading the movies on Netflix since I got the new one.(Tate has already addressed all of these this very morning). Thank you Tate. I'm the weak link. Everyone assumes I can fend for myself but I cannot rely on the tobii working.  Dayshift doesn't place tobii in front ...

2 Last night, 6/3/16, a new-to-the-facility nurse entered my room to administer my night medications via my PEG tube. I tried to tell her to access my PEG by unbuttoning my top; she disregarded my attempts to communicate, reached under my covers, and lifted up my gown. I dissuaded her by vigorously shaking my head, signifying negative to her actions, as well as vocalizing the words, NO and MY TOP, to no avail. She kept arguing her case, which clearly showed me that she was assuming that I was being irrational. I was forced to keep pressing my objection, wasting my precious energy. In the meantime, a patient care technician (PCT) who understood me better came along; I was able to communicate to undo my gown buttons and expose my PEG to make my intention obvious. Again, she, the nurse advanced on me, yanking up my gown. Again, I had to vigorously fend her off but now I was forced to argue my intention with two caregivers, who assumed irrationality and forced care upon me. At this poi...

Every time I get to a place of acceptance, it seems God allows ALS to take that away as well. When I lost my job, I had to learn that a job did not define me. I said, Okay, if I cannot work here, then I will redouble my efforts to get to the bottom of my infirmity, heal, then get a better job. I got my ALS diagnosis. I grieved the loss of my life as I once knew it. I said, If I'm to lose control over my muscles, I will get my affairs in order; I will sell my motorcycle and my car and purchase a wheelchair van. We will build ramps onto the house, widen the doors, add a door to the bedroom, and add a roll-in shower. As long as I can assure my mobility, I can deal.    When I got a whopping dose of frontotemporal disease, as a byproduct of ALS, the combination of wildly fluctuating emotions and increasing caregiving needs, my husband became overwhelmed and tapped-out, abandoning me and forcing me into a nursing facility. My family withdrew. I thought, I cannot do this! Event...

22 "I got to hold a cat! " I could scream it from the mountaintop, if I could only coax my throat muscles into working and get back to the mountains. Today, thanks to Chrissy, a social worker here at Bailey Boushay House, and Sandra, the recreation therapist, I, my husband, and Tessa, one of my patient care technicians, got to go to the "Meowtropolitan" for coffee and cat therapy. That's what I said, coffee and cat therapy, well cats, the therapy part is my take on the situation. I've been starved for kitty contact since my own sweet cat, Gracie, passed away a year and a half ago. Although I've lived in a skilled nursing facility situation for the past two years, my husband, dutifully brought my big, furry, gray tabby "baby" to see me. I yearned for the times when she'd arrive in my husband's arms. He'd place her on my lap as I sat, reclined, in my fancy, motorized wheelchair. I was already unable to pet her but just having her ...

20   1 I gotta talk about it! I had another scrumptious dining experience, here at Bailey Boushay House! And if you're one of my regular readers, you may get the impression that I only blog about Italian dinners. However, I will tell you now, I'm a foodie. French, Indian, Thai, Japanese, Vietnamese, Columbian, Mexican, Tex-Mex, African, Irish, American. By God, if it's a foodstuff, I'll probably try it and, quite possibly, like it! It's coincidental that I'm, once again, going to rave about the awesome Italian dinner we enjoyed. To mix it up for you, I'm going to start at the end. That's right, if I had the option, I would've had dessert, first. Of course, I may well have cheated myself. Dessert was not particularly Italian, but it was my personal favorite...Creme Brulee´. Imagine this...Chef, clad in his classic chef whites, rolls his silver cart of magic into the roomful of satisfied, yet expectant, diners. Atop his cart, whipped cream, lady fing...

23 .1 Raised some Hell today. Do not f**k with my food. I thought I was dealing with enlightened, educated, patient-centered people at this care facility. I am in control of my mental faculties and I've demonstrated that I am willing to modify my diet to keep safe, within the limitations of the declines I'm experiencing, as a result of ALS. I understand that any misstep on my part could result in my death. I accept that and am willing to absolve the facility of any responsibility. Therefore, I believe I should be in control of my preferred diet. I'm on advanced dysphasia as I was coerced to "try" it. Now that I've experienced and found it to be unsafe for my "brand" of dysphasia, I wish to revert back to the regular diet menu. However, the management denied me that basic human right and dignity. The following is my argument as to why their idea of Advanced Dysphasia Menu is actually more unsafe: "Your advanced dysphasia menu is unsafe. Jel...

25 Went to the U Dub yesterday to see the pulmonologist. Been considering a tracheotomy and ventilator to give myself more time on the planet. As you can imagine, the decision to be "trached and vented" is a major one. Will it hurt, is the least of my worries. I was told a few years ago how easy the PEG tube was supposed to be; finding the reality to be excruciating, when the male doctor placed it between my breasts. ALS is painful. Our reality is loss and pain (and medication). Further loss of independence is a big consideration. My reality has me cared for by paid caregivers in a nursing home setting. I'm in a top notch facility but the nurses have not demonstrated proficiency operating the cough assist and suction machines, two machines essential to clearing secretions and preserving my life. And now I have to trust more unknown "professionals" on yet another machine in order to extend my life. . Oh, and my current top notch nursing facility, does not ...