IntrinsicTina

Was sucked into my own life drama, releasing a caregiver and losing a friend in the process.  We all have such a story to tell and becoming such a rare bird, a PALS (person with ALS)! I am writing little blurbs here and there in my personal blog.  Mainly for the catharsis.  Not always able to tell others what I really mean or even fully understand what's happening in my life or my body.

Gonna take me awhile to "exorcise this demon".  The farther away I get from releasing my friend from caregiver status, the more I realize the magnitude of the bullet I dodged. I realized the reason she shied away from transporting me in her vehicle (while we shopped for our wheelchair van) was that she was concealing the fact that she went back to smoking.  I clearly stated that I would only take on a non-smoker citing close proximity and eventual life-threatening breathing difficulties.  Once, climbing in to her car, the smoke was palpable, the butts were in a bottle of water, not to mention her e-cigarette habit.  The worst had to be the lies I told myself on her behalf.  Every time she helped me undress/redress my nose was pressed against cigarette stench that I kept thinking was due to her chain-smoking roommate.  Now, I know better. Shame on me and my assumptions.

The latest news is that I had to let a caregiver go.  It was incredibly hard decision. Painful and nasty and I likely lost a friend out of at the deal.  The bottom line is that it wasn't working out. When I first approached my friend I knew that she had helped a little with respite caregiving of her stepfather who was a stroke victim. I knew that she was a breast cancer survivor as I had the honor of being her friend throughout her ordeal, sitting with her during chemo, being with her on the day of her mastectomy, and visiting her at her mothers home, post-surgery.  I know that she exhibited courage, grace, and dignity in the face of her cancer experience. I knew that she had quit smoking and that she was bipolar. I also know that we lost touch for over two years as I am dedicated to being a sober woman and she was unable to remain so at some point following her ordeal. I also knew that she was down on her luck, living in a bad neighborho...

I am not-so-independent but wish I were more so.  Stopped driving due to the rapid onset and pervasive weakness especially in my right-dominate hand.  Sold my Harley Davidson Deluxe and Subaru Outback, shopping for an economical wheelchair van (Dodge or Chrysler?).  Legs getting weak, balance is not-so-good but I do all I can to preserve what I have: good nutrition, supplements, water aerobics, arthosage and manual ligament therapy. I'm getting limited care at the University of Washington in Seattle but get nowhere when I've mentioned voice-banking.  Hmmm.  Considering Virginia Mason as most of my PALS friends get fabulous care. We are active in our local ALS support group. I am on social security disability and Medicare (which I've paid into all of my working years) but I lost my job at the onset of my symptoms.  Was working as an accountant for a small mfg business who tried to coerce me to commit blatant fraud.  I got super-stressed as I held t...

As you may or may not know, ALS tends to rob sufferers of their ability to chew, swallow, and generally savor food as we once did.  Excess salivation is only the tip of the "iceberg".  With the loss of muscle mass (even in the facial region), the act of eating becomes a tiring exercise in futility.    To extend our lives, some of us resort to allowing a peg tube to be surgically installed into our stomachs else we would succumb to death by starvation, slow and insidious.  I remain undecided on this measure but will likely opt-in. I love food!  I consider myself a "foodie" as well as a compulsive eater but I must stipulate that I LOVE good quality food.  Don't give me a Hershey bar, I prefer Lindt or better yet, Boehm's Gianduja as my husband will attest.  Why go to Applebee's when one can score better taste and quality having the $15 "3 Course Lunch" at Palisade? My appetite has changed since the onset of ALS.  As with most of my activiti...