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 1^st 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.

Hard Days

While things are going pretty well here the TBI and all that comes with it is still a major issue in our family.  Most days we can pretend it doesn’t really exist, I’d like to think it’s because he’s so much better but the real reason is that we’re so much better.  For the most part we can recognize issues coming and do our best to work around them and when we can’t work around them we’ve done a better job dealing with them – for the most part. 

Some days we are both blindsided, or I am blindsided and he’s in such a state of denial/delusion that the thinks he’s fine.   Yesterday was a very hard day.  He woke up feeling “dead inside” unable to really handle human emotions.  When this happens he’s just really hard to be around, he snaps and yells and is beyond irrational.  I have to watch every little thing I say.  Yesterday I didn’t watch my words close enough.  He was telling me that a text that was sent at 10:00 didn’t reach him until 12:30, the text was Mrs. Pastor requesting his presence at church at 11:00.  He had already decided he wasn’t going to church and all I said was “well if you were going you would have to be out the door by 10 anyway.”  I was just blurting out the first thing that came to mind and pointing out that he should really feel bad because the text came too late for him to even act on it if he had wanted to go.  This turned into him screaming at me that they weren’t asking me to go and I need to get over myself.  The time wasn’t the point he was pissed that he didn’t get the text.  Not everything is about my and I need to chill.  I blocked out the nastier stuff, and then he stormed off. 

I know that it’s not him.  I know it’s not him.  I also know it’s not me.  But it is him and me.  He may be dead inside on a particular day but I’m not.  I still feel, I still care, I still hurt.  I feel and care and hurt a lot.  Too much. 

He later came over to me and told me that he wanted to apologize but in his current he doesn’t think he is wrong.  He said that tomorrow he would know he’s wrong, like he has in the past, but given how his brain was working that day he didn’t think he was wrong.  Then he got upset that I was crying, upset with himself for doing that to me.  I hate to let him see me cry because it sends him further down the rabbit hole, telling me not to let him get to me and that I can leave and take everything because I shouldn’t be married to someone who make me cry. 

I cry about our life every few months.  I’ve done a good job finding other ways to vent my anxiety and frustration.  But I do cry.  It’s hurts to hear the person you love say hateful things to you.  To accuse you of hateful things.  To have to tell your kids that you were thinking of something sad and that is why you are crying.   

Loving someone with brain damage is a tricky thing.  Even when you know that his brain doesn’t work like it used to the realities can still catch you off guard and crush you to the core.  Today I am still trying to recover, my heart is pretty broken and I can’t shake the feeling that I am not good enough.  I’ll be fine, I’ll take it out on the treadmill. 

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. 

My First Race Was a Great One - Run to Home Base

6AM train selfie

Yesterday I got myself out of bed before 5AM, laced up my sneakers, drove 45 minutes to the train where my sister was waiting (after her early wake up and 60 minute drive) rode the Green Line into Fenway for 30 minutes and then ran a 5.66 mile race.

Last year at this time I couldn't even run one mile.

When I moved home one of the things I was the most excited about was being able to participate in the Run To Home Base it has everything I am passionate about, TBI/PTSD research, running, and the Red Sox.  I was very intimidated by the commitment to raise $750 but I decided to take the leap and signed up.  I ended the day yesterday totaling $2005!  If you want to donate you still can here.  The money raised goes to the Home Base Program which does great things for those with TBI/PTSD and their families.  I actually going to call this week to see about getting some help for myself since it seems impossible to get Will to agree to go.

During the open ceremony I was thumbing through facebook and twitter and saw that Will had shared an article about the race that featured me.  The night before he said he didn't need to read it because he wasn't going to learn anything new.  That really broke my heart (and my spirit) so just seeing that he not only read it but shared it on facebook and twitter made me ugly cry and really pumped me up for the run.  He seemed to be sharing a lot of stuff about the race and the day - maybe next year he will come.

As for the actual running part, well I didn't train.  I have sucked about running, I come up with every possible excuse.  Work really was an issue but also leaving the house to run after/before working all day seemed unfair to Will.  When I did get out there it seemed so daunting, I was psych myself out thinking about the 5+ miles that I would run 1.5 and have to walk.  I was stressed.  I got out there on Saturday with a goal of 60 minutes, had I been paying attention to my total time I could have done it easily but I wasn't so I missed it by .02 seconds!  Oh well, next year.

My sister covering up Will's phone number, so if I ever get run over while running they can call him.

I mentioned before that Will wouldn't be coming with me so my sister was kind enough to join me so I wouldn't be all alone.  While I was running she helped pack care packages to send overseas and learned more about the home base program, even though she has told me several times before that she has no interest in being a runner she is VERY excited about running with me next year!

Post run selfie

This was, for me, the perfect first real race.  Now for the rest of the photos.

A few World Series trophies - This one's for you Dad!

Some dude getting a little too close than necessary at the start - I had no idea this even happened until I saw the pictures.

Just standing where the greats have stood, NBD.

I Had No Idea How Hard This Would Be

By the time Will actually retired he had been injured for almost 4 years.  I thought I had a pretty good idea of how life would be.  We had good times, we had times so dark that I couldn't see the end of my nose but we seemed to deal with it fairly well.  That was 3,000 miles away from our reality.

Moving home has really highlighted Will's limitations.  Gone are the days that the four of us could hide away in our home sheltered from the world.  Now we have family obligations, work obligations, restless children and countless other things that need our attention on the other side of our front door.  The exposed side, where everyone can see you, where you can see everyone seeing you.  It's scary out there.

We have tried to be "normal" as much as possible, when that hasn't worked we tried to be our normal but the sad fact is that's not really working either.  I've mentioned it a few times on twitter, Will has had to pull out of plans that we've made.  I am running a charity run with The Red Sox Foundation to help raise money and awareness for TBI/PTSD called the Run To Home Base (please donate here is you can!) I was so excited and proud that he and the girls would be there to watch me cross home plate at Fenway Park at the end of the race but he wont be there.  The anxiety of being alone with the girls in public is just too much.  The thought of people looking at him and feeling sorry for him because of his injuries was just too much.  I understand this, I know he would be there if he could but he just can't.  It hurts my pride that he wont be there but it kills my heart that he can't be.  Being there or not is not a gauge on how much he loves me or how our marriage is.

In March we bought tickets to four Red Sox games, I was pretty excited since we used to go to the games all the time in Washington.  It was after a Sox game here in Boston in 2005 that he first told me that he loved me.  We went to our first game last month and it was nothing short of a disaster.  We had to drive into the city and pay $60 to park - in the past we would have take the train in but you can't put a guy with PTSD on the Green Line after a Sox game.

It was freezing that day and he is unable to regulate his body temp since his injury (we didn't know how bad this issue was until we got home - it was never an issue in the Arizona heat) and he was freezing for the 3 days following the game.  He was too anxious to enjoy the game, he couldn't even talk to me.  Now I am going to be taking friends to the remaining games.

He went to the pet store by himself, he was procrastinating leaving the house so I asked him what the problem was, he told me he was afraid to go alone.  The thought of having to talk to people paralyzed him with fear.  He was afraid to go buy fish, the man who ran into a bunker with a detonated explosive to retrieve the body of a working dog because you don't leave a fallen Ranger was afraid to talk to a 17 year old girl about buying fish.  Let that sink in for a minute.

Life is certainly different since retiring.  I knew it would be hard, I even knew it would be harder but I didn't know it would be this much harder.  I am scared that I am getting lost in it all.  Other than my job it's all about him - everything.  I miss me.