Hi Dani, though I am not a vet, my husband served in Nam/Cambodia and has been going to the VA for about a decade, before that every time he tried to receive care from them, he was told to go home and not come back, so I am very familiar with exactly what you are talking about. Most of his problems can be directly related to his exposure to the endless list of defoliants, agent orange was only one of them. He was primarily in the Iron Triangle, so he was exposed to everything you could possibly imagine, and then some.
One of the things that would help you to wade through some of this is to apply to the purple heart club, if you received one during your enlistment. In some cases it will really speed things up, and open doors.
There should be a patient advocate in every VA who is should have good advice and resources to share with you. I see you are in an area with 7 different hospitals, so if one doesn't seem too helpful, there is always one of the others, do all you can to get their names and phone extensions.
The local VA rep is also a great source of resources and good advice for making your way through 'the system' and explaining things like being declared disabled through them, if this is a goal, is much more complicated than you may think. For instance like being declared 100% is more like you have to qualify at 1,000%, as being disabled in one medical instance, will maybe only give you 5% total.
Yes, I am familiar with the idea of 'talking your pain away' idea, and to some extent a good counselor can help you with coping with the stress of being ill or injured, they can teach you new ways of doing things, have hellpful coping skills, but as one who suffers intractable chronic pain from repeated car accident injury and genetic degenerative autoimmune diseases, there is really no talking away the pain. That is just my opinion though. They are sometimes helpful with the resources too, so take advantage of that whenever you can. Keep a notebook with you at all times, and keep track of those who can help you in any way. Ask, ask, ask and ask everyone! If you have to wait in lines, strike up conversations and ask patients.
Read (and keep) the brochures they will have lying about, you would be amazed at what you can learn through them that will help you at different times.
Keep records, and get the doctors and PA's who see you to document what each appointment is used for, and hand carry a list of problems and questions, give them a copy and keep one for yourself. Keep track of the names of all tests, and physicians, don't forget the dates either.
They will have records, believe me, but only if you do! They may tell you they have no record of something specific, until you offer a date, then you will discover that they most certainly do have them!
There should be a University hospital of some type that is affiliated with some of your larger city VA centers. For instance the Baltimore, MD VA is affiliated with the University of Maryland, and in these cases you will actually see the physicians of the teaching hospitals. These are generally where you will find the best care, and certainly the most advanced care, so referrals to those facilities are a must.
You simply MUST be your own advocate, and you can never give up on this, and you have to forever keep an eye out to make sure someone is not dropping the ball. This is my biggest complaint with their care. Much of this happens through the constant change of physican staff.
Some of these things may sound like common sense, or you may already know all of this, but reminders are good. Chronic pain can sometimes rob us of our best ability to think and remember.
My husband has a couple of Army buddies in OK, one in Ponka City, and one in Sparks. He also has another buddy who is an actual VA rep in TN, so If you have a specific question or 10, let me know, and we will call them, and do our best to get you the right answers.
Kris is exactly right when she tells you NOT to give up, or give in!
I sincerely thank you both for your service to our country, and hope that you can get to a better place very soon!
Wishing you well,