IntrinsicTina

I cannot blog when the tobii acts up. Grrrr

It is repulsive to be sprayed in the face with sweat. Yet, some of my best caregivers, do just that. Nitrile gloves cause hands to sweat in a relatively short period of time and when they're removed with an efficient snap, 'they fling sweat droplets all over immobile me. Please turn your back to me before removing your gloves and wipe your hands before handling my hair. Also, the gloves taste awful. When fishing food from my mouth, just know this. SteriMed Plus is a poor quality brand, breaking easily, out-gassing, and awful taste. Don't reorder.

I'm so fortunate! My daughter loves me. What's the big deal? It could very easily have gone the other way. And I dare not forget it. True, I made certain she had good foods, plenty of rest, dressed adorably, and got lots of hugs and kisses. For her birthdays, I learned to decorate cakes and made an amazing Minnie Mouse cake, as well as a Teenage Mutant Ninja Turtles cake when they were all the rage. Halloween, I sewed her costumes, beginning with a bunny costume I modified from a Cabbage Patch Kid's pattern. Next, came a voluminous sweet clown costume from fuschia pink, royal purple, and sky blue satin fabrics. That one was sized so abundantly and was so beloved that she wore it a few years until the witch costume. Yeah, I made that one, too. We checked out stacks of books from the library and cuddled up to read them in our overstuffed recliner. I taught her the fine art of armpit farts, in front of the mirror one hot summer day. We bowled together on a league. I jump...

"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.

Today is my sister's birthday. It may well be her last birthday. We should be throwing her a blow-out party...But we're not. We are unable to. She has cancer, multiple myeloma to be precise. And after three years of fighting, coping with chemo and radiation, embracing baldness, and keeping a positive attitude, she appears to be losing the war. Multiple myeloma is a tough row to hoe; it leaches calcium from the bones, weakening them. We found out about the cancer following a sudden and catastrophic spinal fracture out of the blue. One minute she's bundling groceries into our mother's house...CRACK...groceries drop to the porch. Fast forward to today, she sits in a room at the University of Washington Medical Center, recovering from water in the lungs, discovered during the administration of a new drug. She's been given 3 to 6 months to live. There it is. It's been declared. My baby sister, Renee' was wanted. My mother and stepfather wanted another baby ...

Had I not gotten ALS, I wouldn't have had the opportunity to meet so many new and interesting people, nor had the opportunity to get to know the heart of the people already in my life. People with ALS that impacted me but lost their battle. Where do I begin? Gail Dubose came to our support group meeting in Kent only a few times but I remember her. She relied on her ex-husband before going into assisted living, then she was gone. I never would've known had I not "friended" her on Facebook. Notification of her funeral came in the form of a Facebook event post by her surviving family members. Unfortunately, my husband had a belly full of ALS and wouldn't take me to the service. I got to know people from all over the world thanks to the website www.patientslikeme.com. It was there that I met so many PALS; we support each other to the bitter end, we can't help but become invested in each other, we're on the same plight. But this support comes with a down...

.     23 Had I not gotten ALS, I would not have met and experienced so many interesting people nor experienced the depths of people I already knew. Through the ALS Association Evergreen Chapter, I met an extraordinary couple with expansive hearts who turned their personal ALS journey into a lasting mission benefiting persons with ALS (PALS) in our region. Because of them, I personally benefited: by having a platform in which to connect one-to-one with other PALS, demystifying the disease and its processes; by being able to borrow necessary durable medical equipment as it became necessary with a fast-progressing paralyzing illness; by becoming empowered to do what I can to fight for a cure; by being offered educational resources and opportunities to learn about aspects of the disease I, otherwise wouldn't have been aware of. This amazing couple continue to allow PALS, their families, and caregivers meet right in their living room. Carl's first-hand insight and z...