Tips For Families Battling ANMDARE

I am no expert. I have no idea what I am doing. "I didn't choose this life, apparently it chose me"

Here are some things that will

Not make you feel any better but might give you a very slight piece of mind about  fortifying yourself against this disease.

"One day my pain may be useful to you."

Create The A-Team

This is the crew. The ones that when the shit hits the fan you know you can call any hour of the night and business will get done. Your closest people. Your ride or dies. I am blessed with my crew. They were the most unlikely motley crew. But they came through and they made the cut. You know who you are and I love you.

In case of teeth grinding Invest in football guards and silicone mouth guards.

The mouth guards the hospital has suck. You don't want them. You will save yourself some grief 

Buy a clip fan

They get sweaty. No reason. Just out the blue. Clip the fan to the IV pole and put it on when signs of storming start. You are welcome!

Buy pool Noodles

First ask for bed bumpers. They thrash around and bang themselves. Then Cut the pool noodles and cover the metal parts of the bed not covered by bumpers.

Round with the Drs

There are no secrets. You need to know everything and make sure they clearly communicate the meds, effect of meds and the reasoning for any changes. I get a weekly print out of Jason's meds. Any changes are run by me first. I am not a dr or pharmacist but I made his body. I am the bouncer to his temple. Nobody gives him anything without my say so.

Invest in Johnson and Johnson

Jason is the best smelling patient in this place.

Carmex is your friend

Jason's lips are always hydrated

Grooming is important

Nails, hair, manscapinh is important. If you can't do it, hire someone. Beauty schools have students always willing to make extra cash and will come to you. It's worth it. Just because your sick doesn't mean your not human. Keep up with your loved one.

Ask questions

Medicine is a practice not a science. Doctors can be wrong. Ask, ask again, ask after that, and if you still don't like the answer or feel satisfied ask some more!!!

Take notes:

I keep better notes than the doctors. And I think they know it.