IntrinsicTina

Beginning of August found me at the local hospital with a urinary tract infection and  dehydration.  When they say PALS must be vigilant against infection, boy are they not kidding! I alternated between fever and chills.  What began as gagging quickly turned to retching and the weakness in my limbs was profound.  And still I hesitated to call paramedics or even go to the emergency room until next morning when I had no choice.     Why would I doubt my symptoms? Why would I take such chances with my health?  Temporary insanity!  My husband/caregiver and I engaged in open emotional warfare for well over a month and half.  At the end of July I felt it absolutely necessary report him for abuse and he felt it absolutely necessary to leave me. Bad place to be if you're absolutely dependent on your spouse as a caregiver

Driving through Bowdoin National Wildlife Refuge, we commence to identify some local birds.  The display pond yields one small duck. Approximately .2-miles down the road, we hear a persistent quack.  My husband instinctively looks around the watery landscape searching for the source.  I get a big giggle, then pull out my iPad to shut off my new medication alarm...one duck quacking.

On the road again… We left our home at 2 o'clock in the morning on August 30. We are Ohio and Virginia bound to see my father and stepmother as well as my 88-year old uncle.  We plan on making many stops along the way...Glacier Natl Park, Mt. Rushmore, among others.   What's unique about this trip is that it is being made on a shoestring budget, in a 2001 Dodge Grand Caravan VMI (wheelchair conversion) van hauling a woman with ALS, namely...me.  We are loaded up with all the requisite paraphernalia including power wheelchair, manual wheelchair, bedside commode, multiple pillows, my Deanna Protocol meds, prescription meds, clothes, and other crapola. A couple of rest area naps and a bank stop in Spokane.  Reluctantly we bypass "Pig Out in the Park" to stay on course for Missoula where Tom Beaudette is "keeping the light on for us".  A handicap-accessible room awaits and we actually have a confirmed reservation.  Not our norm.  A shower will be great...a...

Back together after abandonment.  Everything has changed.  Love is finite.  It has an expiration date.  Ours appears to be rancid. While we are physically together, i am alone, lonely, and in agony.  When I speak of love, he hurls the accusation of manipulation.  A well-tred trek from home to vacation home (2-hours in the wheelchair van) through the beautiful Mt. Rainier National Park yields melancholîa and strife between us.  He steadfastly clings to the notion that my world is so small, I may as well live in the confined space of a nursing home.  I feel betrayed as I try to explain the concept of loving and being cared for and watched over and protected as the culmination of a life well-loved. Who says my world is small?  It remains as small as he is willing to box me in.  I am busy everyday...water aerobics 3X/week, sober meetings 3X/week, doctor, dental, and massage appointments, getting my hair done, nails done, and dammit, ...

Could July be the worst month of my life?  It has been filled with volatility and overt anger.  The worst day I thought was mid-month at 3 am when a full body muscle spasm racked my body.  My screams and pleas were met with inaction, derision, and violence. A few days later I posed innocuous questions to my ALS doctor and walked away with a psychology referral.  Four days after that I posed more questions to my primary care physician who curbed the detail and offered another psychology referral.  Another seven days and no appointment set, emotions hit fever pitch, another job disintegrates, and it is okay to leave me with a complete stranger...NOT!  When it appears that he is turning the tables and calling the police on me...Hell no!...I call them on him.  Instead my parents and sister show up...shortly, the unsuspecting caregiver shows up...I yell at her to leave.  He could only offer that the caregiver is female.  Nothing more.   ...

Every three months I see my ALS doc and today was the day.  My FRS is 17 and my FVC is 90%.  These values are down from 28 and 98% respectively.  Not great but not devastating either.  The main driver of the decreases are my loss of mobility as I am now wheelchair-bound.  I have had ALS for a year and a half and my decline is fairly swift...I wanted the slow variety but let's face it, I'm an overachiever. The good news is that my loaned Permobil C300 (power wheelchair) got the Physical Therapist seal of approval and is a good fit for my body.  We got a recommendation for a better cushion, a Rojo, as well as a vendor for an iPhone/iPad support.  This is exciting as I currently cannot dial 9-1-1 to literally save my life!  This should help. I was a social butterfly at the hospital today, meeting Linda White and her daughter, Kirstin, as well as becoming reacquainted with Vic and Jan from my ALS support group.  Additionally, I met a sweet, large...

I know everyone wants to feel good about themselves and sleep the slèep of the righteous.  They want to be secure in the notion that they are good judges of character.  People generally see what they want to see. However, too many of us know the truth of hat goes on behind closed doors.  From all public appearance my husband may look like an unselfish, long-suffering caregiver but I'm here to break my silence and tell the truth.  I am being abused.  Verbally and emotionally mostly with just a smattering of physical to keep me in line.   He has bullied me and dumped on me for years.  He has forbade me to participate in activities which have given me joy and built my self esteem.  He has kept me isolated from those who could help.  Nowadays, it's easier for him than ever.  People applaud his loyalty that he stays with his terminally-ill wife, selflessly attending to her every need.  Seriously?! He is angry, resentful, and cruel. ...