Well, one thing that hasn't changed since we last spoke - my wax and nail girls still come. But, George gave up after his first back wax. 

Since I last wrote a lot has changed. Some harder to accept than others, hence the no updates. Each change is emotionally destructive, and although writing is therapeutic, it's hard to do with teary eyes and double vision which I got recently, not related to ALS. As if there's not enough to accept. We have been accepting, grieving and making the most of the following... 

I now have 24/7 nursing care. Easier on my family, but absolutely no privacy for me or my family.  Some have been f-en doozies, that I can write a book about. Others, like family. 

I have moved down to a nice little cove in the living room. Emotionally a big adjustment, as you can imagine. First, I moved out of my bed with my husband, into a hospital bed in our bedroom, now downstairs to be closer to the nurses. That was so hard. I have grieved the loss of our physical relationship and no way to fill that void. Grieving the loss of our emotional relationship not being able to talk, shoot the shit. Now a physical separation.  Just breaks my heart. 

Rita made my new spot nice and cozy, and matched my meds station with my living room decor. But still, a hospital bed in the living room signals death to me. Anyone hear me? They assure me it's out of convenience, and yes it is. It has been a change I am still adjusting to, it's something I'll never get used to.  At times I feel like a piece of furniture. I watch everyone zoom in and out, to school, work, activities, dinner, and by 8:00 it's me and the nurse who doesn't talk, just is on her phone with her ear pods. I also learned that these nurses are here to administer meds, and monitor my status on the vent, suction me but when it comes to emotional support, I can be hysterically crying, and the nurse won't provide emotional support, not even tissues. Where is compassionate care nursing? Infuriating. I also learned nurses aren't my tv channel changers, so I don't watch tv. (Paulie, if you're reading this I need you to sync my remote to my computer!!) 

My whole body has changed. I no longer can use my arms, hands, or legs, and the most painful has been the loss of my head and neck muscles, which causes head drop. Imagine having a bowling ball tipped forward from your neck!  And you can't lift, nod or turn your head while in a upright, seated position!!  So if you see me with my wheelchair tilted back, or I have a head strap looking like I am going  to the electric chair, don't worry it is just cause I can't hold my head up. The worst is on the commode! My head is hanging between my legs with my face up in the good, the bad and the ugly... with no way to communicate, so you wait... 

To that end (no pun intended), I have been forced to make so changes to the bathroom processes, if that's what you'd call it.  Since my muscles are weak, and I can't help move or stand, nobody's able to lift me. This has been my most dreaded change to my dignity.  To use the bathroom, I have to use a hoyer lift, Google it. Mortifying. Other choices are an external catheter or a diaper. What has my f@cking life come to? I really need help accepting this change. I've lost just about all of my dignity. 
 
You don't know how strong you are until you have no other choice. Isn't that what they say? 

Grateful to still be breathing. When I am on the vent, that will be another level of grief and acceptance. 

Prayers to those facing change, acceptance and grief, may we all find something to be grateful for this Thanksgiving.  Amen.