Here's a post that was hiding in my drafts....

I can't begin to accurately express my rage, my frustration, my sadness, my exhaustion when it comes to this, I don't even know what to call it....shit storm????

I swear if it isn't trying to fix what is broken, it is trying to keep what is about to break, from breaking.  How much can a girl take!?

I am a mother, a wife, a caregiver, a nurse, an adovocate.... many roles, but just one person.

I received the disheartening letter that the claim for TBI and *all* of the residuals have been denied.  Would you like to guess why???

Go ahead.  Take a guess.

It isn't because of the lack of illness, it isn't because of lack of evidence....

go, guess again.

Because the examiner didn't put in her progress note that she "reviewed the service record".  She reviewed the C-File, the notes in CPRS, the labs, the statements in support of claim....

Also, our representive tasked with filing our claims, erroneously filed things "Sleep apnea as a result of ptsd..."  and "Irritable Bowel Syndrome as a result of PTSD"  and things like that. 

Without diming out this dimwit, I will say to all of you, do NOT chance your benefits and claims to someone you don't know.  I should have realized this years ago, when I called the rep to ask a question and he said he could not talk to me. So I asked if my husband could sign a release, he told me even if he had a release, he couldn't talk to me, yet he then proceeded to talk to me in depth.  I was also told that there were "widows who weren't even getting any benefits". 

Widows?  Really?  What a low ball dirty thing to say to shut someone up.  And it worked, because, who the hell wants to whine and bitch and moan when there are women who paid the ultimate sacrifice, the highest price, their husbands.  I felt like an ungreatful bitch.

But as time goes on, I realize that there is something fishy going on.  I think our rep filed these claims worded stupidly to delay compensation.  After all, he told someone else, that these young vets are sucking up all the resources. 

So now, not only do I have to play wifemothercaregivernurse, I have to play this stupid game with the claims system.  I have to undo what he has done.  And frankly, I'm pissed. 

On top of being in the claims system since 2006, I have watched the gross mismanagement of my husbands health.  I am not blaming one person for this, I am NOT bashing our providers care (we like him a lot, mainly because he has been with us for so long, unlike other areas where providers come and go).  I am saying there was a *huge* system failure here, that caused a delayed screening, diagnosis, and then treatment regimen.

On top of multiple delayed treatments, for whatever reason, we've dealt with abuse. 

An audiologist screening my husband when he first came home for hearing loss warned my husband, "We can tell if you are lying about this (the ringing in the ears), and if you get caught lying, you can go to jail".  That was our very first experience.  And we should have heeded our little voices in our heads then....

Then came the time when my husband went in to seek counseling for severe symptoms of ptsd. In 2006.  But because there "was a claim pending for PTSD" (which by the way, he hadn't even been diagnosed, our stupid rep just decided to go ahead and put in the claim) he was turned away.  We were told you can't be seen while waiting for the adjudication of the claim. 

That was a lie, and shortly after I rattled some chains, he was scheduled with a counselor.

Then we have the ongoing, never healing, always hurting, rotten feet.  Every provider that saw these nasty feet had their opinions on it. Diagnosis ranging from athelets foot, to yeast, to dermatitis, to shoe allergy, we have YET TO FIND AN EFFECTIVE TREATMENT.  Creams creams creams. 

After years of begging for more aggressive investigation, our provider put in a consult to dermatology.  They were certain it was shoe allergy.  Commence the patch testing.  Two rounds.  Both of which confirmed he was not allergic to his shoes. 

So I begged for a consult to a specialty.  I didn't really care which specialty, just someone else....Rheumatology? Allergy? I don't care.   Those consults were denied on the basis of "This patient has a dermatology issues.  We will not see him".

So then we get kicked out of the Occ therapy clinic because my husband forgot to go to an appointment.  We can't make appts there because there are other veterans who are waiting to get in.  We can't come back because my "husband doesn't want to make this his priority."

I was told, when my husband confessed he was suicidal, that I had made him codependent.  That this was the most "fragmented and disjointed care" she had ever seen because he didn't follow through.  That I need to let him make his own decisions, that she knows what its like to be in our situation because her husband has an "anxiety disorder."  She sat blocking the door, waving her hand, her chubby fingers accusing me of letting him get to this point. 

So all this time, poor husband in incredible pain (treated only with gabapentin, or tramadol) hangs his head. 

Claims examiners are the worst offenders.  I think they are taught to be as offensive as humanly possibly.  One examiner, who was rating my husband for physical issues, commented that his brother had PTSD too, but he was old, so he could handle it better.

One examiner commented, "Well, I've never seen any one with a TBI graduate college and raise a family......"  Eh, well, you've never seen a wife keep this family just barely above water, and help manage his homework and papers. 

Reading through his chart, I was appalled by the innaccurate exams.  Unchecked boxes, inconclusive recommondations, failure to adjudicate in favor of the veteran.

This has been the 6 hardest years of my life, and I can't imagine how many of these professionals go home and sleep at night.

The system failed my husband.  In big ways.  Over and over again.  Only recently has there been a few redeemers come through.  We have a nice telehealth guy.  We have a nice Federal Recovery Coordinator who kindly reads and responds to my middle of the night SOS's with compassion and never judges, only encourages.  We have a nice Caregiver coordinator, who was kind enough not to kick us down a tier.  And who returns my calls and emails timely.

On top of all of THAT, he had to leave his job, because it was triggering him and causing more harm than good.  I continue to have to take time from my job to be with him, all the while receiving comments and insinuations that I might not last long....

What kind of life is this?? 

Certainly not the one either of us  had dreamed for.