Monday, July 11, 2011

Tough Love

Yesterday I had an opportunity to have a meal with some of the members of my extended family.  My mom is out of state visiting other family and so it was rare to be able to talk to my Dad without anyone around.  While I don't talk to him very often, it was nice to catch up with him.  While he was at the grill cooking steaks, burgers, and hot dogs he asked me how my hubby was doing and he wanted an honest answer and made sure our daughter was out of range so she couldn't hear our conversation.  I guess I always assumed he didn't think much of what we go through because Mom for the most part acts like she could care less.  I don't think she means to come across this way, in fact most people aren't comfortable with such conversation or how to approach chronic health issues.  Dad wanted to know if my hubby was getting worse and I told him in some ways yes and in other ways no.  It is difficult to explain the constant change that TBI and PTSD bring. 

Dad said I look exhausted lately and he thinks I am depressed.  He also said that he couldn't really blame me if I was because it isn't exactly the life I had dreamed of.  While there is some truth in all of that I don't want to feel like a medicated zombie and I have tried antidepressants and that is how they make me feel.  I don't want to be drugged in order to be happy.  I instead take vitamins and vitamin D supplement and try to get adequate sleep and exercise.  I try to watch what I am eating and making sure Its not an emotional thing.   The truth is every day is tough because yes I do most everything myself, including the parenting of our two young children.  It is also true that we are still thriving and there are definitely others out there that have it worse than us.  I really try to not pity myself.  God chose to keep my hubby alive that day in Iraq and I am thankful for the time that I do have with him. 

I don't know what our future looks like or if any of the docs will figure out the best mix of meds to help hubby's quality of life, but for now I try to keep him comfortable through all of his pain and fatigue.  He sleeps a lot and needs more care now than he did a few years ago.  I just hope I can keep up with it all for the long run.  Thanks for listening! I needed to get that all out.

Tuesday, June 28, 2011

A Heavy Heart

So many days I struggle when I think about the depth of what his injuries have done to us.  I have to be honest that I am having a rough night.  I feel like the weight of the world is on my shoulders and at the end of the day I make all of the big decisions that most couples take for granted that they get to make together.  It has become more and more obvious to me lately how difficult it is for my husband to understand and follow a train of thought.  While I have known that he has severe frontal lobe damage for years, I guess I have ignored or not realized how directly that effects SO many aspects of our life. 

We have been trying to sell or rent out or house now since February of this year and I gotta admit I am getting tired of living in a state of limbo.  I have been praying lately and I feel like I cannot have this situation stay this way for much longer and have decided that if nothing happens by the end of September we will stop trying.  As much as I don't like living here I am trying to find the blessings it does offer.  I do love our house and I do love the Mom's group I go to.  God does not always give us what we want, in fact I think sometimes we are miserable because of our own selfishness and he uses those times to help us grow even though we can't see it at that time.  I have a feeling that might be what is going on here.  In fact, my husband and I were both talking about how we really do not have a church around here that we like at all.  It is tough to find one that is accepting and actually understanding of our situation without judgment.  The truth is many people say that they understand and will help us, but we have found to opposite to be true especially in churches which is really sad.

I don't know what our future holds or where we will be or if any of this will work out like I think it will, but I am going to continue moving forward and taking care of my husband and children.  In fact, as much as I don't want to be here the reality is that I am.  I need to get my daughter registered for Kindergarten soon.  I am putting that on my list for later this week.  Tomorrow I am looking forward to spending some time with a friend and supporting our WA Soldier's Angels Dine to Donate drive at Applebee's.   What are you doing this week and what have you been up to?

Monday, June 27, 2011

National PTSD Awareness Day

Today is National PTSD Awareness day.  I would assume that a large majority of people aren't even aware of this fact.  However, my those of us who live with it everyday we are very well aware of it.  PTSD is not easy, but it is something we can live through and with if we just take it one day at a time.  I know that sounds really cliche to just take it one day at a time, but it really does work.  With the 4th of July approaching my husband's nervousness is coming out.  I would say that his PTSD is very different than most Veteran's in that he doesn't really have many nightmares about war as much as he does about his company which was very abusive towards him.  He was a great soldier and the leadership in his company was beyond horrible.  A lot of his PTSD stems from trust issues because of them which has also boiled over into his life.  I don't know that he trusts anyone 100% including me. 

PTSD manifests itself differently in every person that has it and it is not something that is specific to war veterans.  Anyone can have PTSD due to multiple things.  I personally have some from when I was a child and someone tried to kidnap me.  I do not like being outside late at night in the dark.  Luckily during that incident my parents were nearby and took care of the situation but it was really creepy none the less and something I have never forgotten.  I also have some secondary PTSD due to my husband's own issues with his and me trying to protect him as much as I can.  When  you are totally surrounded by something like PTSD you naturally adapt and take on some of the characteristics of it yourself.  I think that is pretty much unavoidable.  If you ask an adult daughter or son of a Vietnam Veteran I am sure they would speak of many stories where they were impacted by living with someone suffering from PTSD.

I often worry how this will effect our own children and though they are young now (5 and 1) I know they will not always be and someday they will understand all too well what is going on.  PTSD does not make their father crazy or a monster or someone to fear.  It is a normal response to an abnormal situation.  If you went off to war and came back you would have some level of PTSD too.  You can't live in that kind of situation or environment and not have some sort of stress related to it.  So many of our troops are coming home with PTSD and left untreated it can have some devastating effects.  We have actually lost more Veterans to suicide than to the battlefield itself.  If that doesn't speak volumes I don't know what does.  The truth is there is still a huge stigma attached to PTSD.  Until we start treating this as a normal response to a traumatic situation the stigma will remain.  I think education is the key to beating the stigma along with action. 

If you know a Veteran or someone else with PTSD, don't be so quick to judge them and decide they are crazy, but rather support them and let them know you CARE.  If we had more people reaching out to our Veterans and letting them know they matter and that someone does care I think that would make a big difference.  Unfortunately the truth is the US is tired of hearing about these wars and they are burnt out on supporting our troops for the most part.  I hardly see anything in the news anymore about our service members and it saddens me that they have become a lost priority among the American people.  After all freedom is NOT free, but how do we remind people of that again?  Today and every day I think about PTSD and hope that if even one person reads this and it makes a difference than I have done something right.

Sunday, May 29, 2011

So many Emotions

Memorial Day to most people is just another reason to kick back, enjoy a long weekend and drink and party.  For me and other people directly involved in military life it is much much more than that.  As I sit here contemplating how many people have died for my freedom I am completely overwhelmed.  How could I ever say Thank you enough to their families for what they have sacrificed?  How many children have grown up without their Father's or Mothers just so that I can enjoy living in a "free" country?  The truth is that freedom is NOT free. 

I also have a deep internal struggle with memorial day because it is a yearly reminder of how close I was to being a widow myself.  There is nothing easy about taking care of a severely wounded Veteran.  My husband's near death experience in Iraq has totally changed the course of my life as his wife and caregiver forever.  When I married him I never envisioned that our life together would be what it is now, however I am incredibly grateful that he is still alive and with me.  I will never assume to understand what it is like for a widow to wake up every morning alone, just as that widow will never be able to understand the ins and outs of constantly caring for a Veteran that has so many needs.  I will not compare our situations for they are not the same.  The point is some gave all and all gave some.  Even the families who have gone through deployments and had their service member return to them healthy and in one piece without being injured have sacrificed SO much for our country. 

It seems that with this war going on forever it seems that the American public has grown tired and weary of supporting our troops.  You no longer read about those who have died in the newspaper.  It seems as though for the most part people could care less if they even think of it at all.  I will never forget for I live with the reminders of my freedom constantly, not only through my husband but through friends of his that didnt make it home.  I know a few widows and my heart goes out to them all the time.  They are constantly in my thoughts and prayers.  If you do nothing else this weekend, I want to you stop the BBQ's and shopping and truly think what it is like for some of these young children to grow up without a father or mother.  I want you to think of the spouse who is suddenly a single parent.  They are deserving of your time and respect.  Let's take time to truly honor them and the life and legacy of their loved ones who paid the ultimate price.. they gave their lives for our freedom.  God bless each and every one of them for their selflessness and their families who must learn to live without them but will never forget them.

Monday, May 16, 2011

Some Fun

Tonight I actually was able to get away and have some fun.  I am part of a Mom's group that is kind of like Mops.  I was on our leadership team this year and it was great getting to spend time with the ladies that served alongside me.  Tonight we went to Red Robin for our end of the year party and it was nice to just relax and not have the kids crawling on me or have the hubby asking for something.  Somehow I still always manage to feel out of place no matter what, especially when they start talking about their hubbies being off at work and the latest things they are doing at work.  I try to be normal and yet somehow no matter how hard I try our situation is always brought up.  I appreciate that people care, but at the same time I miss the days when we were just like everyone else.  I am trying really hard to find a few things/hobbies that are just for me.  I feel like my identity is gone and I want to be able to have something that is just mine again.  I have really been missing Army life lately, even though I didn't know it for long, I loved it.  I miss my independence and yet I don't think I would know what to do with it if I had it.  I guess that is all for now, my mind is just kind of wandering all over the place. I hope you are all doing well.

Tuesday, May 10, 2011

A Silent Epidemic..

Tonight something is weighing heavily on my mind and heart.  Tonight on our VOW blog talk radio show we were supposed to interview a hero, a combat veteran that suffers from PTSD.  I was looking forward to hearing someone speak openly about their struggles with something that isn't really talked about.  I was hoping to gain another soldier's perspective in hopes that I could take something, anything away from it and maybe use it to help my own husband who struggles with PTSD and more than he likes to admit.  It seems like that was not to be tonight because unfortunately this soldier who was lined up to speak is instead mourning the loss of his best friend to PTSD and suicide.  You see whoever his friend was, he was a hero too and yet he lost his battle against those demons.  I do not know who this soldier was, but he was more than another statistic, yet that is what he will be seen as by most.  Why is it that American's see PTSD as some kind of disease that they might catch?  Why do we allow there to be a stigma associated with it? What can we do to continue to raise awareness and see that changes are actually made and carried out?  What will it take for more American's to guinuinely care about what is going on with our Service Member's and Veterans?  Sure it is easy to slap a sticker on your car saying," I support our troops", but how many actively do? I think we would all be dissapointed to know the truth on that one.  Are we seeing a nation that is experiencing burnout? A nation that is so tired of hearing about 10 years of war that they would rather turn a cold shoulder than hear about anything solider that has died? The current trend that I am witnessing is disturbing and it is of great concern to me.  Ughh!! I am just so frustrated that this is even an issue. 

Along with being concerned about our Soldier's and Veterans I am also afraid for our families that live with them.  I am worried about how PTSD manifests in a home, how it effects, parents, children, spouses, etc.  Who is keeping an eye on those who are developing secondary PTSD? Who is making sure the caregiver's of these heroes are not suicidal themselves?  Until recently I don't think much thought or attention was being given on this subject, yet it was and is still an issue.  By now many have heard of Jessica Harp and have read her blog, she is an example of what can happen when family member's are not taken care of.   Thank goodness her suicide attempt did not work and that she is still with us and receiving the help she needs, but what if that was not the case?  How many other's are there like her that feel hopeless right now? 

Maybe a family member is not suicidal but in crisis.  Is there help for them at any time of the day?  The answer is yes, but the tough part is very few know that there is help out there 24 hours a day from qualified professionals.  There have been many times where I have felt incredibly overwhelmed with this role that I was trust upon.  I never asked for my husband to be blown up in war.  I never asked for him to leave to Iraq one person but return to me a completely different one.  Am I blessed and happy that he made it home alive?  Of course I am! BUT that does not change that NOTHING since then has been what I thought it would be.  When we got married, I accepted the fact that we didn't get a real wedding because I knew once he got home we would get one.  Ha! We have been married 6 years now and I still have yet to have the wedding I have always wanted.  Our plans changed when he was injured and the wedding is only one small example of what I thought would be that is not. 

I think it is easy for people outside of our situation to look in and say well you just need to  do this or that and then things will be better or easier or you just aren't trying hard enough.  My answer to all of them is to Shut the crap up!! and that is putting it nicely.  Until you have been in a situation, it is not fair or even right to presume you know what someone should do.  I would never tell a widow what she should be thinking of feeling or do because I have not walked that path.  I do however support her, and let her know she is in my thoughts and prayers.  I would ask for specific ways I can help and then do something if requested and it was within my abilities.  I guess the point of all of this is to just realize that we need to wake up and understand that things are NOT what we think they are.  There are many signs out there to how someone is really doing, but the thing is we have to actually stop and really care.   How many times have you had someone see you at the store or wherever you might be and say, "How are you?" and you respond with, "Oh, I am great" but not really be great at all? Maybe you just want them to go away, or maybe they can't handle the truth. 

For me I don't think people would want to know the truth if I was to actually give it to them.  Some days I am actually great, but most of them time I am struggling with something because the life of a caregiver is not an easy one, especially when you are in your 20's and suppose to be having the "Time of your life." It is barely 9 pm as I write this, and yet I am alone once again.  Most of my evenings are spent this way, the kids are fast asleep and so is my husband.  He used to be able to stay up for hours on end and get maybe 3 to 4 hours of sleep and be good to go for another day.  When that IED blast went off and damaged his brain, it took that freedom from him and me along with many others.  I sit here lonely for your freedom and this is how most of my days end.  I have left you with many things to ponder, I hope that the next time you ask someone how they are doing, that you actually are willing to listen to their reponse. 

Sunday, May 8, 2011

Just another day

I was dreading today, and rightfully so.  You see it is Mother's Day and while I love that I am a Mom and my kiddos are incredibly precious they are 5 and 1, I still did not look forward to today.  In fact I pretty much dread most holidays, I am sure you are thinking, "What is she crazy? Why would she say that??" Well the truth is and you can hate on me all you want, but I just don't want to have any expectations of anything anymore.  In fact, I have never had a great Mother's day because when your kids are as young as mine are, the duty to take care of things is put on the husband.  For most families that isn't a horrible thing, sure men in general have a tendency to be a little last minute or need extra reminders about an upcoming special occasion, but even so most end up making it happen in the end.  When I first married my husband he was amazing at remembering the little things, when I flew in to TX so we could get married he greeted me with a kiss, a rose, and a stuffed donkey from Shrek.  He knew that my love language was gifts and he could remember my favorite color and he knew that my favorite flower is red roses.  Today is drastically different from then.  It seems that every time I try to move forward and be normal I find constant reminders of how we just aren't.  The invisible wounds come back to play and destroy the calm I once knew.  My husband was so sick all day and was pretty much asleep all day.  He missed out on an extended family dinner last night, and breakfast this morning.  I try to not let it get to me, because it is just our reality, but I still find myself sad and mourning the loss of what use to be.  What makes it even harder is to see all of my friends post on facebook what wonderful things they got from their kids and what their husband's did for them to make the day special.  While I am happy for them, that they were blessed and remembered today it is tough for me to read.  I am sure I just sound so selfish and down in this post, but I don't really care.  You can judge me all you want.  This is just my way of getting my feelings out and you will get the raw version of me here, so if you don't like it or have something nasty to say you can just leave.  The truth is, I am used to this and every time a holiday rolls around I prepare myself for nothing, because that is easier than being disappointed.  I don't blame my husband at all.  He doesn't have the ability to remember things, and he can't drive either, so even if he could remember something well he would still need help to do anything.  Sometimes, rarely someone will help him, but for the most part it is all just ignored. 

Today I tried to think of positive things even though I was mourning for his former TBI/PTSD self.  I wish I could go back to those days when his brain worked, but at the same time I am thankful for everything we have been through.  I feel like we I have weathered more storms than people twice our age.  Today I thought of and prayed for a friend who is still struggling to conceive after 2 years of trying to get pregnant.  I am sure today is tough for her as well because I know how desperately she wants to be a mother.  Today, I thought of everyone who has lost their mother and how sad and void they must have felt.  This was my dad's first mother's day without his Mom and I thought of him.  Even when I feel awful I try to remember how there is always someone with it worse than me, and I try to keep things in perspective.  I will admit that is not easy to do, but I try.  I smile because my little girl made me the cutest home made card and she is a very perceptive child.  I think she is more aware than most 5 year old's. 

I feel like I am starting to get sick with what my hubby has, and this isnt helping me either, but again I am going to try to not let that get me down.  I am loading up on OJ and taking vitamins to try to stay healthy because all caregiver's know you don't just get to take a break because you are sick, it doesn't work that way.  I am done for now.  Until next time have a good one!

Monday, May 2, 2011

Being Part of a Team

I am so excited to be able to be part of a team that makes a difference but first let me take you back to the beginning.  When I married my husband everyone I knew thought I was crazy, why you ask?  We had known each other for a very short time, about 6 months actually and most of our communication was online due to the fact that he was in the Army and stationed at Ft. Hood and I was here in Washington State.  We only spent two weeks together in person before we were apart again and when I flew to Texas late January of 2005 to marry him I had no clue what turn our lives would take just about a year later. 

So what happened? Well the obvious is that he was blown up in Iraq, but before that we got married early February of 2005 and I pretty much got pregnant right away with our daughter.  Coban left for Iraq 2 weeks after she was born and I spent the year away from him with my family here in WA, something I wish I hadn't done looking back but you live and you learn.  In April of 2006 Coban called me one night and he sounded different, as though he was having trouble forming words and sentences.  He could hardly hear and I knew something was wrong.  At that time neither of us had any clue what a TBI was or what the IED blast had done to his head and the long term consequences he would suffer. 

I now know more about the brain than I ever thought I would,  I also know that our love for each other is stronger than what some experience in a lifetime.  I know that we can weather in any storm thrown our way because we have been through a lot of difficult things and we are still together.  Do we have a perfect marriage? No.  There are many days when I feel more like his caregiver and a Mom to him than I do a wife.  This is not even close to the life I envisioned we would be living right now, but I accept it nonetheless and I am trying very hard to be okay with it and I know God will give me the strength to get through it.

Coban now has severe frontal lobe damage and mild damage to the rest of his brain.  He suffered not only the original IED blast that was huge, but also many subsequent ones due to the fact that he was never sent out of theatre.  When he did return home I pushed for testing to figure out what was wrong with him.  It seems that over these years I have lost a lot of who I am.  My identity seems wrapped up in him and the care he needs as well as taking care of our children who are 5 and 1.  Very rarely do I find something that is for me.  That is why I am so happy to be part of VOW.  Check it out and please read the articles and listen to our Blog Talk Radio Show.   It is nice to be part of a team again.

Sunday, May 1, 2011

A Wave of Emotions

First of all I will start by saying it has been far too long since I posted something on here.  Quite frankly I did not like the way my blog looked, and so I didn't feel like writing on it.  With the help from a friend, I was able to give it a much needed face lift.  Having said that I will now move on to what I want to say.

This weekend has been FULL of emotions that I don't know how to even put into words.  If this turns into a huge mess, I apologize now in advance.  My husband was injured in Iraq April 29th of 2006.  On April 28th of 2011 he was finally recognized for his sacrifice by receiving his Purple Heart in a ceremony that was simple, but amazing and it is something I will never forget.  On the 29th we celebrated his 5th Alive day by just being around each other.  My hubby doesn't really like a lot of attention or fuss over it all so I tend to keep things low key out of respect for him.  The 30th was spent resting and catching up on sleep from a very busy week.  We were blessed to be able to have his brother join us from PA and along with him our daughter S was able to come home.  She had been with family for 4 months visiting and experiencing some normalcy. 

Today is the 1st of May and there was some huge news that broke all over the news.  Osama Bin Laden has finally been killed by our US troops! I am glad that our soldiers have not died in vain.  I am glad that we no longer have to hunt for him.  Unfortunately, I can not celebrate for long because I know there will be retaliation against our troops.  It is not a matter of if, but rather when.  I hate this and will continue to keep all of our troops in my thoughts and prayers.  We may have cut off the head to their operation, but I am sure they had many trained up and ready to take his place because they have known this day would come at some point.  We must continue to be vigilant in our own security here and abroad and not let this keep us from being aware of our surroundings. 

I am sure I now sound like some crazy paranoid PTSD chick, well in one sense I would say that is totally true.  I dont know of any spouse/caregiver of a wounded veteran that doesn't have some form of secondary PTSD.  It will be interesting to see the reactions of our citizens in the days to come.  It will take awhile for it all to really hit me I think.  I have so many emotions because it was his(bin laden's) men who were responsible for the IED that could have easily killed my husband.  I have a lot of reflecting to do and that will take some time.  I am so thankful that my husband made it home alive, but my heart is also so heavy for those who did not. 

I have so much I could say, but for now I think I will leave it at this.  I still can't even wrap my head around everything I have thought and felt this weekend.  I am by nature not a very emotional person, yet I find myself feeling like a good cry would be nice however the tears won't come.  I think being in a pensive state is good for me.  I hope that I will never take for granted all that has been sacrificed by my husband and others for my freedom.  I don't think people in general truly understand everything military families have given up for their ability to enjoy the freedom's so many of us never have.  I say this all the time and will again, It is not only the service member that sacrifices but also the family that loves and supports them.  We do it because we love them and because we too choose to give up so that other's don't have to. 

Monday, March 7, 2011

A long overdue update

So when I started this blog I thought, "I will post all the time!" hah! lol.. I am far too busy to do such a thing despite my wanting to.  I have found that being a caregiver for me means constant change.  Recently my husband and I talked about how difficult it is for us to be in a constant state of flux.  You see he has a TBI and PTSD and they can be very different from one day to the next, and I can almost always roll with that no matter what kind of day it will be or what issues they present us with on any given day.  However, the one thing that always throws us for a loop is the unknown random paralysis.  It is easy for people to accept your challenges and disabilities when they are pretty much predictable, but when you go from walking one day to paralyzed the next, people can't handle it.  In fact it can make them so uncomfortable that they don't even want to be around you.  I know this plays a large part in why my husband is sadly such a homebody, even he struggles with the unpredictability of it all.  I guess I mourn for the days gone by when we were full of life and spontaneous and could plan a date and actually keep it and enjoy a dinner and movie out.  Now those things are just faded memories of what was, and once in a blue moon they happen for us but it sure is rare indeed.  I think there are a number of reasons that my husband does not like being around people.  He doesn't like crowds, he doesn't like feeling vulnerable, he doesn't like when people stare at him in his wheelchair or whisper behind his back, he hates when people walk right in front of his wheelchair and expect me to stop on a dime and not hit them.  The list really could go on and on, but the point is that war and injuries change lives forever.  Will he get better and learn to cope? Yeah, I think so.. but there will always be the random nightmares or flashbacks to how horribly he was treated by his own men for no good reason.  My husband served, was injured, and then kicked out with no purple heart even though he deserved one.  He is not the first hero I have heard of with a TBI that never received one.  I will continue fighting for as long as it takes.

Ugh! I was starting to ramble.  Okay now I am moving on to something else completely..
Our house is on the market and we are hoping and praying it will sell soon.  So far there has been very little interest and the interest we have received is all from those who want to rent to own.  I am not sure if this is a wise path to take, but I am doing my homework and will make sure It's handled very well if that is the road we decide to take.  Okay, well now I am exhausted and probably not making sense anymore so I am going to to go bed.  Later!

Tuesday, January 25, 2011

Something for Me

Today I did something that I should do more often.  I took some time away from my caregiving and role as a Mommy and went and had a massage.  Before Christmas when I was at the mall shopping there was a kiosk for a new massage place coming into the Tricities.  I signed up for their MUCH reduced price to give them a try.  I had to reschedule my original appointment a few different times due to the fact that something is always changing in this house and every day is different and unpredictable.  I am glad that I had a chance to relax and let some of my stress go, because honestly the last few weeks have been incredibly rough.  After my massage I went and grabbed a quick lunch alone and then drove home because I had things to get done and I needed to grab the baby from my friend who graciously offered to watch him for me.  My neck hurts less than it has in months, and while that is exciting now I am frustrated that it will go back out at some point.  My hips also go out because my feet are so flat, and unfortunately there is nothing I can do for that. 

I think as caregivers we often put ourselves last constantly, but today I put myself first and it felt really good to let myself focus on me for once.  :)  I hope that if you are burned out and have not taken any time away from it all, that you will pay the money and do something small, even if you just pay someone to watch the spouse and kiddos for a bit so you can have some sanity "me" time.  I know I hope that I will be able to do something for myself more often than I have been. 

Saturday, January 22, 2011

One of those days

Today is just one of those days when I REALLY wish my husband could/would do more.  I know he has his limitations, but sometimes or really a lot of times I feel like he COULD do a few things, and he just refuses to even try.  I hate that the weight of everything all rests on my shoulders.  I will ultimately be the one that is responsible for seeing that the small repairs to the house happen and that we get the house up on the market by the end of the month.  I honestly am just so overwhelmed by it all, not to mention that any progress I have been making is easily undone by either my hubby or the baby.  I also can't get as much done as I want to because I am constantly having to stop to take care of the baby because hubby can't handle him.  I struggle with knowing how much to ask/make hubby do and where to draw the line with his limits.  It is incredibly frustrating.. anyone else struggle with this?

Thursday, January 20, 2011

Damn VA!

Warning- This is a rant..

So for the most part, I can put up with the crap from the VA, but I am sick and tired of them giving out crappy excuses for not doing their job.  Today we got a phone call from them canceling an upcoming appt that has been scheduled for like over a month.  Their reasoning was that the provider needed to be on an interview board so therefore he could not keep the appt.  This is the SECOND time this appt was scheduled and now canceled.  Oh and to top it off they have him on a waiting list for another one because they aren't allowed to schedule him out any farther than 15 days and those are already booked solid.  What happened to Priority Group number 1 for being an OIF/OEF Veteran?? Seriously It is ridiculous!! Not to mention my husband should have had blood work done MONTHS again to check some levels for some new powerful meds he is on and they have not once checked them.  Thank goodness I keep an eye on him and know what to do in case of an emergency.  There are some other cases I know of as well that going on with other people I won't mention, but lets just say that these Veteran's who have served our country with honor and dignity are NOT being shown and given the same thing in turn.  The VA sees you as just another number and I am incredibly sick and tired of it!

Wednesday, January 12, 2011


Okay, so this is a warning! I am venting on this entry because I am just FED UP!  I am so exhausted and tired of fighting for the things that we should not have to fight for.  I know too many of you understand, and that in itself is upsetting to me.  What happens when Veteran's are not taken care of?  Everything in their world starts to fall apart, whether it be their own self- esteem of the well being of their families and those who take care of them.  I have watched too many marriages crumble because the caregiver was not supported.  Luckily, I am more resilient than some I have met, and I thank God for that.  Do I like that I struggle daily to keep on top of everything? No! However, I love my husband and It is not his fault that we are in this situation.  He did nothing wrong, in fact he did everything right and was still punished for it. 

I am tired of asking the VA for things that should be easy to receive due to my hubby's medical conditions.  I don't know how many times I have asked for a better wheelchair for when he is paralyzed, do I have one yet? No! Of course I asked like 5 months ago, so I guess it hasnt been long enough yet.  I don't really know what their excuse is, but I am sick of it all.  At this point I am ready to write off his doctor's here and just get the crap outta here.  Of course we are already in the process of doing that, but why should we have to move to receive appropriate care?? It seems kinda ridiculous, but yet here we are getting ready to move so that he can have access to the things he should have been getting the last 4 years.  Why does it take 3 years to get them to finally fee base out some local care?? Unfortunately they are now too late as we are on a waiting list for a TBI/PTSD program in Bethesda, MD.  It is sad that we have to go that far for a decent program and treatment. Anyone else out there having similar problems? Feel free to chime in and leave me a comment..

Saturday, January 8, 2011

Birthday Time

Well, yesterday was my birthday and I gotta be honest, ever since the injury I never really look forward to anything that has to do with my husband having to remember something for me.  I have learned to expect nothing, so that if he totally forgets It's not a big deal and I don't get hurt.  I really wasn't expecting much, but this time he decided to send me away at a friend of mine's suggestion to get my hair and makeup done for our date.  I was really surprised that he was okay with this, because he usually hates us spending much money, because we are on such a tight budget.  I also hardly ever do anything for myself.  He comes first almost always and the kids as well.  I am not a very primpy girly type so I wasn't looking forward to it, much to my friend's dismay I am sure.  I was not a fan of the makeup job she did, mainly cause I think I was allergic to it, but I did love the hair cut and curly hair.  It is important to remember to take care of ourselves, yet I find that most people don't understand the financial implications involved, or the fact that we are just plain exhausted so much of the time that we would rather get a nap in than anything else.  I don't know about you, but I do so much paperwork along with the daily grind of making sure he is eating and taking his meds as well as taking care of the baby (he is one) that when I do get some down time, I just want to rest. 

I planned a simple evening for us to celebrate my birthday.  I feel so much older than I am due to the stress of the last four years, but we did actually have a fun time which was a nice change from our normal.  We went to PF Chang's and enjoyed a meal and took our time eating it.  It was nice that the baby was with a sitter and being taken care of and that we could just relax and enjoy some normal conversation without him getting upset or yelling.  I had thought we might go to a movie, but he was really exhausted after dinner and we have plans today with some family and a few friends so I didn't want to wear him out.  We decided to skip the movie and come home and get some rest so he wouldn't be exhasuted today, and I think he only slept half of the night before he had a horrible migraine (dang TBI UGH!)  Here's to hoping today will be a good day for him. 

Thursday, January 6, 2011

A New Year

As I look back on 2010, it is no wonder why I find myself exhausted and burnt out.  It seems as though I have fought more for things in the last few years than I ever have for anything in my life.  It is no wonder to me that so many of us have given up our jobs, because advocating for our wounded soldier is a HUGE job all in itself.  There are many days when I just want to give up, because I am just so sick of it all and It's so unfair.  I often wonder how I am going to do this for the rest of my life.  My husband who has TBI/PTSD/Periodic Paralysis.. will need to be taken care of for the rest of his life.  Who will take care of me? I often fear that social security will not even be an option for me once I am older and need care because I am not working, therefore I am not paying into it.

How can I work when my husband can't be alone?  He can drop at anytime due to the paralysis, yet the VA does not consider him to need much in terms of respite hours.  We get 10 a week, and yes I am thankful for the little we get, but it in no means compensates for the amount that I put in on a regular basis in his care.  I feel like the VA doctor's really DONT get it! They say they do, but when he has appointments and they ask how things are going, they ALWAYS take his input over mine.  You would think that they would listen to me since he does have brain damage, yet I am often shoved into a corner and ignored.  Luckily I am not a quiet person and have no problem making myself heard, but I tell you they want to push me off as much as possible.  It really upsets me that caregivers are treated so horribly.  When I recently saw the caregiver brochure that the VA provides, I just was in disbelief.  The cover of it has a bunch of OLD people on it! Now, I am not going to disrespect our older veterans, but COME ON! we have so many younger veterans these days, yet the resources available do not reflect this. 

I am tired of my husband receiving substandard care.  I am sick of fighting to get him an appointment in any kind of acceptable time frame.  You would think a 100% disabled Veteran would be the first priority, yet often times we wait over a month for an appointment, and the wait for a mental health appointment is double that.  My husband has been told he has severe PTSD, yet his counselor can only see him once a month, if that.  I am left trying to pick up the pieces and take on skill sets that I have not been trained for.  Somehow I feel like I have become his ST,OT, PT and yet I don't have a degree for any of those things.  In fact, I have never been trained at ALL for anything caregiver related.  We did not even have the normal hospital experience where you can at least learn something.  My husband has actually NEVER been in a hospital since he was injured, yet he has severe damage to parts of his frontal lobe, and I am just magically suppose to know how to handle it all, not to mention the PTSD and Periodic Paralysis. 

Everything that I do know, has been of my own doing and mainly been found online.  I would say that is good and bad.  I am glad that I have access to so much information at my fingertips, but what if that isn't enough or I find something that is just outright wrong and don't know it?? Where is the accountability within the VA? Why are there so few programs for caregivers?? Someone really needs to wake up realize how much we do.  Yes, I am aware of the caregiver bill that was passed last year, but when will that ever become a reality?? If the VA is in charge of it, I am guessing it will be another year before we see anything, if that.  I wish I had more positive things to say, but I really have not had a good experience with any of this.  In fact, my life has spiral down so much from before he deployed and was injured.  Thank goodness I believe that God has a plan in all of this even if I don't have a stinkin clue what it may be.  Thank goodness for the Wounded Warrior Wife club out there, even if none of us wish we were part of it.  I look forward to what 2011 has in store for us, and I hope and pray it is MUCH better than 2010 was.