IntrinsicTina

Undoubtedly, you have heard the one about "I was sad that I had no shoes until I met a man that had no feet". On any given day, I can be be prey to self-pity. When  I waken in pain due to poor positioning, or when I go without a meal due to being lost in the shuffle, or when I'm stuck in a damn old folk's home, it is easy to feel neglected, abused, and wronged. But today I learned of a man that became paralyzed and must live in an adult family home that is flea-infested, where they don't bother with positioning nor laundering the bedding very often. They have failed to offer him a meal for sixteen hours straight! Allow me to express my gratitude for the relative safety and cleanliness of this place. Generally, I get a shower twice per week at which time they change my bedding. And this place certainly does not have fleas. Thank the good Lord!

Today is my birthdate. Does anybody know?  Apparently not my "friends" and caregivers at the home. For all of the "I love you"s that get readily voiced around here, I do not feel the love. Famous last words. About the time I printed those ungrateful, selfish, and self-centered words, I get flowers delivered from  ProFlowers.Com, which is my daughter's m. O. They were gorgeous roses of white, peach, and dual pink interspersed with sweet-smelling purple stock.  The bouquet was a glorious first clue of how my day would go. (sigh) When will I learn to be grateful in All things?

Started my day in a snit. Housekeeping cannot seem to get together on getting my clothing into my dresser drawers, instead packing shorts, tank tops, and pajamas into the closet on hangers. Those closets get so overstuffed the clothes end up in a pile on the floor where nobody bothers to pick them up. Then an unsuspecting aide arrives and asks me what I want to wear. I respond, "What do I have? " I get asked the same question as though I never answered and I blow a gasket. Woe is me, nobody greeted me with a smile and a"Happy Birthday! " Nobody surprised me by cleaning out the closets nor did they lay out my Birthday clothing. I refuse help until my closets are clean. I've been waiting for weeks for my regular aide to catch on to my routine. God knows she can't understand my requests between my ALS accent and her Ethiopian one. But, today I make my stand and have the Resident Care Manager making order so I can make some logical decisions. A waste of her va...

Sleep, I've been sleeping a lot more lately. Generally, I wake up or am awakened at six or seven in the morning. Next is my breakfast around eight. At times, I will nap in between. Lunch is noon and I've been napping many days from breakfast to lunch (that is new for me). Sometimes I don't bother waking for lunch either. Dinner is five and while I am normally awake, I frequently opt out. Saving my appetite for more palatable fare.  And saving my energy for more engaging company, like my husband or the evening aides who have known me since January and know I am of sound mind. Part of my extra sleeping has to do with increased fatigue due to the ALS, but part is due to lack of stimulation. The company is not very interesting and the food is cardboard institutional. Additionally, I lack adequate outside access. Looking out the window is just not enough especially if that window doesn't open or looks upon graffiti-laden fences. If I were home, I would be sitting on the fr...

I was called a free spirit by a woman who bothered to get to know me. I was shocked by her assessment. At that point in my life, I had "I don't know how many" jobs. I was a food service worker, cashier, bartender, typist, chiropractic assistant, rental assistant, real estate personal assistant, busgirl, administrative assistant, executive assistant to the president of an aerospace company, a business owner, a Mary Kay representative., need I say more? I was unemployed and looking with a newly-acquired accounting degree after 40. I was Alcoholismworking on my second marriage, blending-in my beautiful daughter, making amends, staying sober. Which implies that I was a drunk at some point in my life. On closer inspection, following a bad break-up of my marriage to my daughter's father, I got kind of wild. I attempted suicide, fell in hero worship with my paramedic and learned about skydiving. Went skydiving and had it videotaped for posterity.  Started hanging out with ...

We did it! We walked in the 2014 Walk to Defeat ALS in Seattle. We made our team goal and this was our first year of participation. We had a dozen walkers show up and what a great experience it turned out to be. There were balloons, vendors, ALSA friends, PALS, children, dogs, family, friends, music, cameras, and camraderie. I never realized how much fun I'd have! Way more people showed up to walk than I imagined. First, my daughter surprised me by showing up from sunny California on Friday night. How she and my husband kept that secret is beyond me. My sister, Renee, arrived with her bestie, Jennifer. My dad surprised me and walked for me and the Admiral at his place of work, a nursing home in Issaquah.  My step daughter, Angelique, brought my honorary grand-daughter, Lizzy, to walk. My brother and sister-in-law, Steve and Emily, roared up on their Harley Davidson. My friend and partner-in-crime, Lynda Muir, brought her daughter, Journ. My husband and top contributer, Rodney, br...

Today marks two years from my diagnosis date. ALS sufferers generally live two to five years after diagnosis. I'm grateful that I've made it to the two year milestone and I still feel relatively good. I still take food by mouth although I am careful about what I eat. First to come off my menu was popcorn. No matter, I replaced it with Jelly Bellies, buttered popcorn flavored. Yum! This year I took peas and corn off my menu as well as soup with mixed consistencys, like chicken noodle and vegetable. I miss corn. The item that I miss the most is cold, juicy watermelon. That was my craving when I was pregnant with my daughter. It's my go to during the summer and I could put one away a day. This year I got choked up on one serving. I can still drink thin liquids but I have to extremely careful to tuck my chin to swallow. Yes, I occasionally choke and cough. I am no longer able to walk even with assistance. I think the last time  I walked was June, it felt like my knees were go...

It's so easy to get frustrated when you have ALS. We who are accustomed to doing for ourselves, of having it our way, and doing for others are especially prone to frustration. Whether expressed or not, frustration is a tough emotion as it is akin to anger.I did not think I was angry but I knew I was very frustrated. Had I known I was dealing with anger, I could have employed my secret weapon, the Serenity Prayer.  (Oh yeah, I did that.) I could have talked to other people in my predicament. (Oh yeah, I did that, too.)  Or I could have spoken to a professional. (Hat trick! ) There is much to be frustrated about from sunrise to sunset. I cannot get myself out of bed, nor can I remove or adjust the face mask on my bipap, neither can I uncurl my own hands when they fist of their own accord. If my extra-sensitive call button is placed out of reach, I am unable to signal for help.When they ask me what I what I want to wear how do they expect me to answer with a mask strapped to my...

Lots in store for me this month. One of the activities the home has planned is a day at the Washington State Fair. I plan to go if for no other reason, I love the fair food. Scones, deep-fried pickles, popcorn balls (for my husband), cotton candy, Darigold flavored milk, lemonade, are among my faves. Additionally, my husband's union gave us tickets to the Point Defiance Zoo. That is a great activity for me, room to roam in the power chair and animals to gawk at. The second Sunday of the month is the regularly scheduled meeting of ALS Association Support Group. That one activity is the best lifeline to sanity and positivity I have in my arsenal. We compare notes on where we're at, what we're doing, what resources are available, and add humor and levity to the mix. We have slow progressors as well as fast ones and unfortunately we have to say goodbye to some. But who better to say goodbye to you than the very people who have walked the same path with you. This is also my ...

This week, containing the last holiday weekend of the summer, has been eventful. Despite my new tendency to take hour(s) long naps in either the morning or afternoon, I have discovered how to transfer photos from my external harddrive onto my Tobii "eyegaze" computer; watched "World War Z" on Netflix on my Tobii, shared "Heaven Is For Real" with the nursing home, enjoyed a lot of positive kudos for our group participation in the #icebucketchallenge for ALS, and read "Shadow of Night" on my iPad. Since it's the end of the month, allow me to recap. The first part of the month found me "Free at Last". I was finally allowed to drive my own wheelchair again since getting my license suspended last March. (That's another story.).  Part of the nursing home went to the Woodland Park Zoo in Seattle and my husband and I met them there.   It was a day of relative freedom and fun in the sun.  My daughter came to visit which always means fu...