Following v Not Following: I'm Beginning to Understand the Rage

Hi Everyone!

Recently, after rejoining facebook, I decided to look into the possibility of joining a group for those caring for, and or living with ALS (in his papers, it does state; bulbar ALS symptoms specifically), because sometimes, as empathetic, and sympathetic I am, it can be difficult.

Case in point;

The other night, he had decided to order dinner.  He asked me where I'd like to order from, but being as I can find something ANYWHERE, he's the picky eater, I said, "You choose." Preceding convo below;

Husband: let's order from Farm Fresh Cafe
Me: OK
H: look at the menu.  I'm ordering a burger.
M (after looking): OK.  I'll have a tuna wrap.
H: forget it.  I thought you'd get a turkey burger.

So, no dinner delivered that night.

I half expected it, because he's always doing stuff like that. He does all of the food ordering when online but if it has to be called in, I have to.  IF I regulate that job to my 17 yr old, and he overhears, he'll cancel dinner. If he finds out afterwards, he won't eat his food.  And I must add, if I were to cook, or make something, he'd NEVER eat it!

OK. So, this event frustrated me because, it feels like I'm in an alternate universe, so, I vented on my twitter, luckily, because a male said, "he doesn't have control over his body, so he tries to control you."

Well, that made me understand his lunacy better and I was able to go back downstairs, and NOT have a war.

It's situations like that, behind why I wanted to join a support group.

UNFORTUNATELY, we don't jive with the mainstream.  I, certainly, never have.  And to join these private groups, you have to tell them what hospital you use, which doctors.  WELL, WE DON'T USE ANY!! And, imo, that's why he's still here, nearly 6 yrs later!

I know now WHY this has people upset (bc in the beginning lay ppl would tell me bulbar wasn't ALS, but it is).  It upsets people because, THEY'VE DONE WHAT THEY WERE TOLD.  They, followed the orders given, and, THEIR LOVED ONES DIED!  THEY, are no longer with them in physical form.  Yet, here we are, rebuking the system, and he's here!

It is my firm belief, that had we gone the western medicine route when he was given the diagnosis in Feb 2013, he would've, beyond all reasonable doubt, been given opioids, (probably even fentanyl, given the lobbying for it at that time, AND we live in PA), which would've hindered his already compromised capacity to breathe.  He would've been thus mandated for at minimum, monthly doctor appointments, adding to the morose, and morbid realization that his time is limited (even though it is, FOR ALL OF US), which is a mind f&%k, imo. Basically, I don't believe he'd be here today, if we went that route.

So, I get it.  I understand. And as always, I advocate YOU doing what is best for YOU.

But, I will share with you what the husband does do;
HE likes his CBD, etc. (from same said plant).  He laughs, he works, he uses his scooter to get around.

He certainly cannot walk well, play soccer, do jumping jacks, but he's here.

WE ARE ALL given a death sentence at conception.  ALS, doesn't mean the end, anymore than anything or any other day does, can.  You can CHOOSE to live. And as with anything, (depression, etc.), YOU CAN.

The choice is ALWAYS yours.



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