Vent - I'm tired!

That sounds so stressful and I'm sorry you and your family are going through so much trouble to get good health care for your son. We're a military family too and my husband is set to retire next year. I'm pretty worried how the health care will be when he's a civilian. Both my DH and myself have a host of health issues at the moment. We'll used military treatment facilities if possible, but the costs and uncertainty of it all keep me up at night.

((HUGS))

(((Elaine))) I am so, so sorry. I've been tearing up and feel so horribly for your son and you. 

I've dealt with more pain than anyone should ever have to, but when I fell on my stairs and cracked a vertebrae I could barely function. I can't imagine how pai.nful OI is. NO CHILD should ever have to deal with that.

My grandfather was a vet and lived right by UNC Chapel Hill and Duke. His insurance required him to go to the VA hospital. They were horrible! He had 13 heart attacks before he died of a PE. He wound up having to go to Chapel Hill. The cardiologists there revolted and refused to let him go back to the VA. Until he needed another foot amputation. He died the night before the second surgery of a PE. My mom's sister became a nurse because of all the crap my grandfather went through. He really suffered. 

Just talking about the VA hospital makes me so angry I can't see straight. 

The whole health system here in the US is just crazy. Nobody I know who has chronic pain issues has any issues with the US going to "socialized" medicine. It's not the best, but anything is better. 

My dh has always gotten jobs that came with great insurance. Still it took forever for me to get straightened out. We wish we had never left Chicago--I got so much worse down here. The difference was that my doctors in Chicago were the kind that went to the mat for me. When I had 15 boughts of Pancreatitis, they insisted that I get into Mayo. The "specialist" at Loyola who was the head of the department (until the hospital's nurse supervisor heard what he did to me--the nurses left the floor with my elderly roommate in the bathroom stranded-- I was weak as a kitten and had to drag her back to her bed and crawl down the hall for help. The roommate didn't speak English but told her daughter what happened. She told the nurse supervisor, who brought me a gift basket and thanked me herself. So I told her what that idiot had done to me--he lied and said I was going for a test before surgery, and I woke up with this drainage tube that caused all the pancreatitis) So my doctors got together and got me into Mayo on an emergency basis. The specialist immediately knew what was wrong. 

The whole Doctors as God attitude really hurts people. It took several years of my dh, BIL and me pressuring dh's mom to get better help. She was of that age where you don't question the doctors. Her main doctor is incompetent (she gave me a flight physical even though my other doctors told me I should be grounded--I didn't ask. It was just up for renewal, and I thought she was incompetent so I didn't say anything to see if she'd catch it. Nope. Everyone else can hear the problem with a stethoscope. 

I also refuse to let people "experiment" on me. Nope. Not happening. I've ticked off a few docs, but the competent ones say that they prefer patients that try to understand. I do grasp a lot of it. 

You have to grasp it. If you don't, you get nowhere. 

I did not realize it was a rare gentic disorder. I agree-no thanks to the training case.

Go from here forward. I say that as a mom who beat myself up over my daughter's state of limbo waiting for a diagnosis when I knew what she had.

I would love to give you a hug and say it will be better, but you and I both know that we always fight for our kids, especially when they have a disease without a cure.

Your tenacity got him this far and will continue to do so.