IntrinsicTina

I said it before and I'll say it again, I Have more fun with my daughter even when we do, not much. I never left my room, and yet, we covered a lot of ground. She transferred photos into my photo frames (a project backburnered for a month), ordered my eyeglasses online (backburnered 3 months), and sent out a customized Facebook campaign notice for the upcoming ALS Walk for a Cure. All while we visited and enjoyed each others company. Anyway, I enjoyed her company while I got to hear her stories of her life with her boyfriend and my grand dog. Apparently, my grand dog rides on their paddle boards and goes crazy barking whenever faced with sea lions and much to their horror, he jumps into the bay to attack. He's oblivious to his disadvantage with his diminutive size. They could gobble him down quick. Yeah,  I still have a grand dog, no grandchild, yet. .Also, good news!  My sister, Dawn, the one I keep at arms length, has a second chance at family life. Her daughter that she...

My daughter's visiting from out of state, again. You know I'm happy!! She is my happy pill. I get more energetic. My days and my nights get sorted out. Everything's just better when she's in town to see me. This visit she and I spent all Saturday watching home movies that my husband had transferred from from VHS-c to DVD. Afterward, we watched the Seattle Cossack's DVD. This copy was purchased in Sturgis at the 75th anniversary of the Black Hills Rally.I have been memorialized forever as a groupie of the Harley Davidson motorcycle trick riding team along with my girlfriend, Rita Cook. I can live with that. Additionally, we watched me skydiving. At 30 years old, I was facing divorce and life as I'd known it. I had met a paramedic who told me of the exhilaration of jumping out of a perfectly good airplane. One day, I awoke with skydiving on my brain. I drove over to the airfield and signed up to jump that day. I also paid for the video package, which gave us som...

Had a great day, finding a new venue for usefulness. I wish I could tell you but then I'd have to kill you. Unfortunately, upon my return from an outing, I needed care. I was apprehensive since there wasn't any Tina-experienced staff available. (This was my first venture back in my wheelchair since my spine was so injured about a week ago.) I had to settle for caregivers who, historically, don't understand my speech nor "get" my care. One PCT and one RN who ended up hurting me... Again. Given no other choice, I needed to get out of wet pants and grab a nap before our monthly ALSA support group meeting. I felt I had to trust in the system and the process and give these caregivers a chance. (Famous last thought.) Same issues, different caregivers, another day. Things went bad immediately. I could not even believe it. What do I have to do? Die?  They fumbled my head control on my wheelchair, then took my hands from the armrests. I implored them to hold up my ar...

The following is an angry rant from last month. Today, I'm more accepting and no longer consumed by anger and jealousy. Why publish this post? Honesty and full disclosure.  Coming to terms with the things I cannot change and the poison that sometimes takes root in my brain. Time to do more work...I got a message from my mother tonight going on about my sister's health issues and how my other sister is with her. And she's so glad that she's with her, taking care of her. Give me a God forsaken break and gag me. Am I supposed to be sad for her? She has had the attention of the entire family for the duration of my TERMINAL illness. Her illness, while life-threatening and serious, could be helped by quitting smoking and, eating healthfully, and exercising. Yet, she flouts medical advice, keeps smoking, overeating, gobbling pain pills, and driving under the influence. Sounds like a death wish to me. Meanwhile, I have no chance at survival, no matter how much I don't ...

It's a big ole bummer not being able to talk intelligibly. It affects my very life, my safety. Once again, if I was not so willful, I would've slipped off into the great beyond. It amazes me that I could be fighting for my breathe in front of three registered nurses and a patient care technician, all very competent and caring, but unable to pick up on visual cues that I cannot breathe properly. Allow me to lay this out for you. I'm fully dressed in my power wheelchair and it's time to get me ready for bed. It takes two caregivers to safely prepare me and transfer me from chair to bed. My transfer was attempted by a patient care technician (a strong follower) and a registered nurse (unfamiliar with my care).  To prepare me for bed, required a change to nightclothes. To remove my shirt and bra, they raised my armrests, as required, and bent me forward to unfasten. I went into trouble quickly. Normally, it's a fast procedure and they concentrate on holding up my tors...

Imagine a disease that depletes your muscles so thoroughly that your body collapses on itself, suffocating you. A disease that progresses so swiftly that there is no equilibrium or status quo. A disease with symptoms so diverse that caregivers cannot keep ahead of the declines, putting you at risk (of being killed, not just dying). Imagine a disease that will likely snuff out your dreams, hopes, and bank account, Including that of your surviving spouse. Imagine having no treatment and no cure. Imagine if the unthinkable happened to you. Imagine if you were healthy, non-smoking, non-drinking, cooked low fat, exercised, and were mindful of your environment. Would you feel betrayed to learn that your disease may well have been caused by toxins in products we use day to day? I am outraged!  I watched "the Human Experiment" narrated by Sean Penn and I'm a true believer. Even though the movie did not name ALS as one of the diseases caused by toxic chemicals in our environ...

My husband returned from Sturgis today. The sun really tanned him and he seemed truly happy to see me. It hurt to not be able to go, but I resolved myself to the reality of not being able to go, ever. It made me feel better to hear that I was on his mind. He missed me taking photographs. He missed me when he was in Missoula at Cracker Barrel. He remembered that we wanted two of those white rockers for the back porch in our Packwood home. I believe him. The tears of lost dreams glisten in his eyes, breaking my heart. He brought me gifts from Sturgis but he didn't have to. I wanted a t-shirt but he brought me two plus an official scarf and a hat from the 75th anniversary of the Black Hills Rally. He told me where he went and what he did. He told me who he saw, including one of my best friends, Anne. I'm glad my husband found non-drinking friends to be with while he was in Sturgis. The Black Hills Rally is a non-stop party and he admitted that he wanted a drink. I'm gratef...

It sure is hard to lose good caregivers! They become friends and even family. They spend quality time with me, showing me kindness, patience, and love. And I drink it in, fill up my heart, and they become a part of my soul. Is there any greater love? Really? Tonight is my last night my "bestie" caregiver, Brittney. I cried the instant I heard. Some how it feels like losing a daughter. I felt so connected to her, like a close family member. But, like a daughter, she must leave the nest and go forth in the word. I can only wish her well and pray that all the best in the world comes to her. I can't help but reflect on other wonderful caregivers who touched my heart and left a gentle imprint on my soul before they moved beyond my reach. Assan, Kellie, James, Hattie, and now, Brittney. From Life Care Center of Federal Way, there was Kiley, Lynda, Ruth, Andra, Cecelia, Priscilla, Brenda, Mama Sue, Nicole, Kori, Diane, Pam, and others. Before that was John, Judy, Marcie, Car...

It's hard to watch life pass you by. Harder still to watch your family live their lives while consciously leaving you out. Their ignorance and arrogance is unbelievable. A member of my family told me that I have to understand their point of view, that I have to understand that everybody has to have a chance to process my diagnosis. I wonder if she has had enough time? I wonder if she once thought, really thought, about how it was for me to be on a runaway train. To lose use of my fingers, then my hands, then to lose the ability to walk up stairs, then down, then to have to use a cane, then a rolling walker, then a wheelchair, then a power wheelchair. Nobody gave me the opportunity to understand. I just had to suck it up.

Two years and nine months since my ALS diagnosis. Of course it's a countdown and mostly this will be stark reality. Fasciculations (mini muscle spasms) are everywhere. Sometimes, it feels like someone is incessantly tapping on the back of my shoulder, outer ankles, or right arm. Larger spasms lock my jaw open, pull my neck crooked, and jerk my ankles and toes askew. Pain spikes then recedes when the spasms release. I use tidal breathing and mindfulness to get through it, passing up medication increases. The index finger on my right hand taps out an erratic rythem to the tune of dying motor neurons. My attentive caregivers and I chuckle, giving us comedic relief to the mundanity of brief changes, care, and feeding. Most worrying is the muscle spasming in my chest, particularly upon awakening. It, briefly, causes my heart to hitch and skip, setting me to gasping loudly to catch my breath. I don't dwell on the fact that the breathing issue will likely take me back to my Maker....

Had a visit today from a long-term, estranged girlfriend. This was her second visit in as many months since we have reunited. You know, it is how they say, a good friend picks up where they left off. It is like no time has passed at all, except that we must fill each other in on events that occurred in absentia. She seems to blame herself but it is my fault. We made the mistake of working together then found ourselves opposed on several issues. It was her job first, so when we were at continual cross purposes, I grew depressed then quit the job. I think we tried to remain friends but I held resentments I refused to discuss and we grew apart. When first we met, my girlfriend was part of a couple. I met them near to twenty years ago at a motorcycle event called "Sun and Surf" in Ocean Shores, Washington. My daughter played a huge part in our introduction since I wanted to go to the Saturday night dance with my friends. Kids were not allowed and the Christian Motorcycle Asso...