Showing posts with label VA. Show all posts
Showing posts with label VA. Show all posts

Tuesday, January 5, 2016

Oh hi PTSD, why don't you come on in



Here we go.  When last I left you I felt I had nothing more to give.  Blogging was something that stressed me out and I was living a very low stress life.  Things at home were great, we were almost like a normal family and our issues were the same small issues everyone has.  Work was looking up, I was seriously considering taking a job that would require more of a commitment from me, maybe even start using my brain at work.  We were floating along as happy as could be when suddenly, at the end of August, it happened.

I don’t even know what “it” was really.  Something happened and we went from actually going out and enjoying a concert together to the next week with him in the back of an ambulance and me following behind driving like a crazy woman.  Panic attacks were the diagnosis.  Lots of them, so bad that he convulsed and had to be taken to the hospital because the convulsing and shallow breathing could bring about seizures.  We’ve been dealing with his TBI symptoms that we had ignored the fact that he has PTSD too.

What we’ve learned since this all started is that PTSD and anxiety are major assholes and will likely pick a time when you are happy to remind you that they are there and want to run the show.

Looking back we both know it wasn’t quite as “suddenly” as it appeared.  Will had been getting sick for months, throwing up every morning and every night.  Unable to eat most foods he was living on vegetable soup and green tea.  As any man would he ignored it, thought he must have had a bug or something.  Going to the VA to testing seemed worse than his symptoms.  He quickly lost over 30lbs, he looked malnourished and had very little energy.  But he tried, we still went on date nights and he played with the girls as much as he could but something was off.  Mid July his sleep was no longer restful and dreams of horrible images of what he saw and dealt with in Iraq started.  Then the dreams started to include me and the girls…it was too much for him to talk about so he kept it to himself.

Anxiety and all things PTSD related don’t just go away.  You can’t just wish it not to be so and *poof* it’s gone.  We should have listened to the early signs. 

Shoulda, coulda, woulda.

From the ambulance to the hospital and back home all in one day and now our lives are forever changed.  It was after this that we learned just how useless VA healthcare is.  When they would return his call or deem him sick enough to get an appointment hey didn’t know how to treat him.  I wont get into all the details now but he was sent away numerous times with no treatment at all.  He was expected to drive all over Massachusetts to doctors who are impossible to contact and are so overworked that finding out what is causing your physical symptoms is just too time consuming.  He was on Prednisone for over 2 months for an unknown (maybe) allergy.  I think we all know the VA loves to throw pills at problems.

One of the best moves we made was contacting The Home Base Program which is run by The Red Sox Foundation to help post 9/11 vets deal with PTSD & TBI.  They have been wonderful; doctors who listen can genuinely care about how he’s doing, how I am doing.  Although they are strictly mental health they paid for him to have labs done at Mass General Hospital to try to do what the VA wouldn’t.  Unfortunately, we still don’t know what is physically wrong with him we have wonderful people working to help with the PTSD.  I will talk more about this program in later updates, I'm sure!

Since all this has happened I have kind of been a mess.  I am surprised with how quickly I was able to detach myself from all of this and process very little emotion with everything.  I had a big cry when I made that first 911 call and 2 full on sob fests since (one at work and one in my car) but that’s it.  It’s not that I don’t want to feel sad about what’s going on, I just don’t have time to be sad.  Life didn’t stop because Will got sick.  TC still started kindergarten last fall, Addie is still waking up to poop at six AM daily and needs help with that.  I still have a full time job that I need to get to so that we don’t deplete all of our hard earned savings.  Mouths need to be fed, snuggles need to be given, laundry needs to be washed.  For the last several months it’s all been on my shoulders.  If he did have to leave the house I had to drive him.  I’ve swallowed my pride and become a paid caregiver through the VA, I should start seeing that money next month.

Work has been great about all of this.  My time off beyond my 80 hours vacation isn’t paid but my job is safe thanks to FMLA which gives 1000 hours to care for a vet.  But working less than 20 hours a week some weeks has really hit me in the savings account.  It sucks, but thank God we had that savings account.  Now there is even more pressure on me to be at work because I am carrying the health insurance.  One of the benefits to serving is that you are supposed to have healthcare for life, HA!  On New Year’s Eve we counted down the seconds not to 2016 but to Jan 1st because when that clock struck midnight he was covered under real health insurance.   

This is where we are now.  I may or may not elaborate on some of this stuff.  If you have an questions please ask – I am very open to talking about as much as I can without violating too much of his privacy.  I feel like stories like ours need to be out there, people need to know what is going on with our combat vets.

Friday, September 12, 2014

Fun At The VA - Not Really

When we left the army Will was told to go home and within the next few weeks we would get a letter telling him when his first appointment would be.  We waited, waited, waited...and waited and nothing.  Well long story short, the paperwork was never filed and he wasn't assigned to the VA.  We took care of that in June and in July he got a letter for an appointment in August.  The week before his appointment he was called and told he was being pushed out another month into September.

He pretty much lost his mind on the woman who called and told him this was unacceptable.  He is a 90% disabled vet who hadn't seen a doctor in over 9 months and they were going to push him out another month.  He told her that he wasn't going to let them do this to him and he WOULD be seen much earlier than September.  Before hanging up he made sure to ask that he not be put in a secret file where he wouldn't be seen until months after his death.  A few hours later he got a call that an appointment happened to open up a day before his original appointment...imagine that.

He's been going to the VA in Providence, RI because it's really close to where we are in Massachusetts but he has to drive 40 minutes into Massachusetts to drop the girls off at his grandparents' house then 30 minutes into Providence go to his appointment drive 30 minutes to the girls then 40 minutes back to our house - it's not ideal.  We've been making it work because we don't have a choice.  Yesterday he had an appointment in Providence and happened to get a letter at his grandparents' house telling him that he had to be at the VA hospital in Boston the following day (today).  He called me at work and asked me to take the day off to go with him.  He can't drive in Boston, it is just not even an option for him in his current state.  (And why did this letter go to an address we had updated months before and why did they have a phone number that had been changed months ago as well...we have been getting letters and calls from the VA in both MA and RI since July??)

We weren't really sure what the appointment was for, he had to check in the the compensation/pension desk so we thought it had to do with his TDLR (he's only on temporary disability for some stupid reason but in 4 years it will be permanent).  What this really was was singing for his supper.  He had to go prove that he is still messed up.  And apparently they can call him in to do that at any point - for the rest of his life.

His first appointment was a psychologist who went over every reason he's messed up and how him being messed up totally makes his life suck.  It was a lot of fun, really everyone should do that at least once a week.  At the end of the hour she said her report would state that his depression was sever but his PTSD seems like it's getting better...So now we are left to sit and wait for the next 4 months to see of they are going to mess around with his PTSD rating.

Appointment number two was neurology where an emotionally drained and humiliated Will had to again sing for his supper and prove to another doctor he has never seen and will never seen again that his does, in fact, have a TBI and it makes his life a living hell.  You can imagine Will was in a horrible mood at this point and was doing his best to give this doctor the benefit of the doubt but he seemed to take everything personally.  He even told Will that he should chill out because this office was pretty chill.  Will almost lost his mind so I stepped and and reminded the doctor that is was very easy for him to say sitting in the examiner's chair and that he needs to take what Will is going through into account.  A lot more happened in that appointment, I was kicked out while he performed the most basic neurological tests.  During this time Will was telling him that it is beyond messed up that He's been home for 9 months and the first neurologist he was seeing wasn't to treat but to evaluate him.  The doctor's response: "If you don't like something take it up with the VA."  Totally dismissive, cold and horrible.  Will reminded him that as a doctor with education and clout it may mean more to the VA coming from him and not some messed up soldier.

We will be taking this up with the VA, Will is going to go out of his way to be sure that everyone knows just how horrible this man was to him - telling someone with a TBI and PTSD to chill....as well as so many other issues. 

Tonight we are drained and emotional.  We feel like Will is being treated like an unwanted stepchild.  But at least TC told me that I'm a bad mom so that was a nice cherry on my shit sundae.