IntrinsicTina

Ya got me! Blatant false advertising; I have no intention of talking taxes. In my defense, I figured nobody would read a post titled Upon My Death. Am I right? 😼 ...Not that tax is sexy...

.1 I'm afraid my time is ending. My battle is soon over, with a foe who has slain so many wonderful people. I am but one of many. I'll not see my daughter marry, nor bear my grandbaby. This makes me sad. I hate to leave my husband, the love of my life.  We had such dreams, houses to finish, miles to ride, vacations to take, and love to make. Several times, I've awakened, sluggishly, locked half in, half out of a dream. Nurses have, lovingly, held my hand, while I've cried reluctant tears.

17 A friend died today. That phrase, all too familiar when one collects friends with ALS. What was noteworthy for me, was my reaction to it; I was enraged. An example of frontotemporal disease, the emotion-altering gift to 10% of ALS sufferers? Or an understandable reaction to this debilitating disease? Or I'm just an a**hole? You be the judge; I can't stop you anyway.  My first reaction to the news was grief; tears streamed down my face, as I recalled her effervescent personality. I only met her a few years ago during an ALS event. She was magnetic; you wanted to be lucky enough to be in her orbit. If she was attractive, the added combination of her husband's devotion, and her faithful sidekick, a lovely retriever, made her impossible to resist. If I'm unflinchingly honest, I coveted her life, with or without ALS. Her husband never abandoned her, never left her to steal her last vacation, and probably cuddled her in bed toward the end. Her community came together to...

Quietly, it came, to what end, I'm not certain. A preview, I'm not sure. One moment, I am with you. The next, sliding inexorably, to someplace else. A toe hold in this world, my body anchored here but love beckoned. Yet, love held me here. I don't want to leave you. I'm not seeking permission to go.

24 Saturday, my friends brought me a meeting, a recovery meeting. I so appreciate this simple act of love and kindness, this act of service, my lifeline to the program of Alcoholics Anonymous. Although, it must be hard on these friends to bear witness to my deterioration, they are faithful in their mission. I've been around the program of Alcoholics Anonymous long enough to know that the motivation is not purely altruistic. They get insurance of another day of sobriety; they get the opportunity to live their lives happy, joyous, and free. Even though, they have their choice of many venues to acheive this goal; they could attend any meeting of Alcoholics Anonymous, work with a sponsee, work with a sponsor, or any other person for the purpose of recovery. Heck, they could go take a meeting to another person confined to a nursing home, hospital, or in a recovery center, or incarcerated in a jail or prison. But, they spend time and resources to come to bring a meeting to me. I am g...

They sent her home, nothing else to be done. No more chemo, stem cell therapy behind her, crumbling bones, roughly breathing, pain. She died. Now I know grief, pain clawing it's way out of my damaged throat. Copious tears, but not enough sound. Pain this searing should be accompanied by keening. A girl so sweet that she never would bad mouth a soul. .

I may pass sooner than later. I'm having terrible spasms throughout my organs and around my heart. I wake up with my whole body quivering. Much to my dismay, nobody seems to notice.  Fasciculations herald the death of the muscles, in my personal observations. Therefore, I figure I will likely die suddenly from a catastrophic organ failure. I know I'm paralyzed but I'm unnerved when my body seizes. I gasp for air almost every time I'm changed, as I'm being lowered, my body stretches, then my diaphragm spasms big time.  Though I'm gasping, caregivers continue to lower my body to proceed with changing, without realizing it, they are increasing pressure on the chest, with the weight of gravity. Instead, it makes more sense to raise the head of the bed, to reduce pressure on the chest, then pause until the spasm (gasping) passes. This was my state of mind yesterday evening.  Luckily, I got out of my head and shared with my husband and one of my favorite, and mo...

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 .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 ...

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...

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...

What a great couple of days! The June installment of the ALS Association Support Meeting held on the third Wednesday of the month at Bailey Boushay House. Although this particular meeting brought up some feelings of loss and grief, it was educational, inspiring, and peaceful. Barcha taught us about P.E.R.M.A. Otherwise known as positive emotions, engagement, relationship, meaning, and accomplishment. Not what you might think and something I cannot speak to. But it explained why I am happy for the most part despite my disease. Another reason for the great days was a very special visitor, Rodney's cousin, Ruthanne Brauch, who has been steadfast support since before I got ALS. We met when I planned a 95th Birthday party for Aunt Mac, my mother-in-law, Magdalena "Madeline" Flink. Somehow, in the midst of all the party hubbub, we made a connection. I liked her immediately, and she liked me. We loosely stayed in contact, then somebody in the family grapevine got their wires c...

My name is Tina and I'm an alcoholic in recovery.  I am humbled by being able to claim 18 years and eight months of contiguous sobriety. I need to tell you that I'm terminally ill living in a hospice care facility. And I am happy, joyous, and free. I am one of the lucky few to be blessed with ALS (also known as "Lou Gehrig's Disease") or amyotrophic lateral sclerosis, a progressive, degenerative neuro-muscular disease that has no treatment and no cure. That is correct, no treatment and no cure. Zip, zero, and nada. Go home and get your affairs in order and we don't know how long you have. How did I handle this solemn proclamation? About like you'd expect a veteran AA member with 16+ years of  "Letting go and letting God". Yep, I fell apart. .How am I going to tell my loved ones? When and what will I tell? What will my husband do without me? What about my daughter? Cat? Chickens? Our homes aren't complete. What about work? Will I qualify f...

1 Reading, or more precisely, being read to, by a volunteer-turned-friend, "Awakening the Buddha Within", Is having a profound effect on my understanding and acceptance of myself in life. While I've found some degrees of spiritual enlightenment on my path since discovering Alcoholics Anonymous twenty years ago, this book is jelling together my understandings of principles and my life experience. My recall on step one is sketchy, although I think I understand more of why I "failed" to achieve more traditional success during my lifetime. That is not to say that I was a failure. I was not.   I was not...So many things. I held a lot of jobs throughout my lifetime, the longest spanning four years working for a chiropractor as his assistant at a pivotal point in my life. My highest career achievement was working my way up from temporary office worker to Executive Assistant to the president of division of a global .aerospace company.  My most formative and fun jobs...

The problem is caregivers that leave me on my back too long, don't support my arms when I'm between 45 and 90-degrees and lift the bed legs up. They over challenge my diaphragm and lungs. Gravity pushes down on my diaphragm. (I'm not strong enough to fight against gravity anymore.)  Elevating my head without, first, boosting me up in the bed, forces air out of my lungs. Folding me up, or "taco-ing" me, in the bed, by elevating the legs, forces even more air out of my body. Then, when four people stand around looking at me, "waiting for me to my calm down", feels like murder. I cannot get enough oxygen into my body. How long can you survive being "burked"? They say that new care directions are in place. Indeed, this is noticeable in some of staff and I appreciate the heightened attention to detail. However, there remains individuals who remain unchanged and that is frightening. Particularly, when I get two at the same time. Then, I am forced t...

Do Not Resuscitate. That is a scary place to be. I have a purple wristband on for everyone to see. That requires trust which I don't really feel. I worry that DNR broadcasts that I want to die which I do not. I want every day possible as long as I am well-cared for and in an enjoyable, aesthetically appealing environment. I hold out a flicker of hope that I might get a grandchild to look at, smell, and rest upon me. Ironically, I worry that I will die from neglect rather than from natural causes and the thought angers me. In my mind, I hope there will be an inquiry but I know better. What's the difference? I mean, either way I'm dead anyway, right? Nobody cares but me. Let it go.

Some days I can really relate to Brittany Morgan, the lady with brain cancer who chose to end her life on her terms, rather than die horribly on cancer's terms.  Death With Dignity, in my humble opinion, does not go far enough.  While I am glad everything worked out well for her (presuming she is not gone to Hell for her actions), people like me with a muscle disease cannot self-administer the prescription, Therefore Death With Dignity is not really attainable. I am forced to live this life such as it is. Although I missed my window of opportunity, I doubt I would have taken it when I was able. I still had hope. I get so very frustrated with caregivers, my condition, and myself! The nurse last night was unhelpful and patronizing. When I wanted to be turned onto my right side, he told me that he could not, although he had done just that while changing me moments before.When I tried to speak to him, he didn't even attempt to understand me. He kept saying mm-hmm mm-hmm mm-hmm...

Here it is, a new year! I did not think I would see the holidays at this time last year. And though it's a morbid thought, I doubt that I'll make it to the holidays of 2015. It's not that I don't want to be around then. I do. But, as this latest bout of illness has shown me, life is fleeting, and I am impaired. I know I need something to look forward to.