Wednesday, December 31, 2014

#DearVA My Husband is Succeeding.

#DearVA, 

My husband is succeeding. I want the #VA and the world to know that. It doesn’t look the way that people might perceive success to be. He doesn’t work, and he has a hard time taking care of the kids when it becomes absolutely unavoidably necessary for him to do so. He gets overwhelmed and wants to lock himself away in our bedroom. He relies heavily on our older child to help with our younger child, which he knows isn’t fair but can’t be helped at this point. But beyond that, he’s in school. I won’t lie and say that he has a grand plan with career dreams. But he’s in school and this is such a miraculous step in our lives that I am more proud than I am able to express. He went to college before. I thought it was a good one because it was a small community college… but the campus was crowded and the numbers of people there were detrimental to my husband’s psychological well being and he quit. We live in a small town now and he attends the local university. The buildings are much further spaced out so he feels like he can see what’s going on better. And this also allows for a much larger “personal bubble” as he can walk in the less traversed areas. His mere attendance is the miracle that I’m so proud of. His mentality while he’s there is to keep his head down and keep his mouth shut and get through it. It’s not something he takes a great deal of pleasure in, though we’ve finally found the area that he seems to like studying and have chosen his major now, so hopefully the pleasure will come. And he’s not talking to his classmates or forming relationships or friendships. He goes in, takes copious notes, comes home and studies his notes, runs through them with me. I read his textbooks to him and he takes more notes. I listen to his assignments and counsel him as necessary, proofread his papers and make suggestions to him. I am his personal tutor and he often says that without me he wouldn’t and couldn’t be in school. But I want people to see that he is successful, not because of me but because regardless of whether he needs help or not, because he has the drive to keep going. He has the ambition to finish his degree. I want #NewVA to see that my husband is not just a disabled vet. He’s not just collecting a check. He has drive and while he doesn’t know where it’s going right now the same can be said for many college students. He’s trying to find his place in this world again and he’s not letting the fact that it’s hard and he’s excruciatingly uncomfortable stop him from doing this. And damn it, he gets outstanding grades. He says that when his degree is complete he will not walk with his class because it’s too much and too many people… but you better believe I will pick up those honor chords and hang them proudly in our house. I will send out announcements and I will throw a very small party to celebrate him and his accomplishments. #VA and #NewVA, you have no idea about the drive and determination and struggle of these men and women. It may take time and it may take multiple tries and I surely can’t guarantee success… but if you knew what kind of efforts this takes, you’d see the sheer success that I see. 

Successfully Yours, 
100% Navy Wife


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#Dear VA,

Tonight I want to thank you. 

For finally providing my Veteran with a Sleep Study appointment. 

You see, every night it's the same; either he's not sleeping (therefore I'm not sleeping), he's tossing and turning, having nightmares or he's snoring so loudly it keeps me awake. The snoring is the scariest, in my opinion. You see, it's in these snoring episodes that he stops breathing. It's a terrifying prospect to face, not just for me but for my husband. 

It keeps me awake at night, when he sleeps, listening for the inevitable moment when he doesn't take in a breath and I have to wake him up, gasping, from his "sleep." 

It's been like this for a while now. We requested a Sleep Study in 2012. 

His appointment has been made for February 2014. 

For two years we chased this appointment, asking at every PCM appointment, where we'd hear the same, "It's in the system" response.

Why is that?

Why is it that it took TWO YEARS for a simple appointment? 

Hopefully the #NewVA will work something out so that important appointments like this aren't two years in the making.

And in case you're wondering, this was written at 4:23 am, after a night of no sleep for me and my Veteran husband. He didn't even snore tonight, because he didn't even fall asleep.

But again, thank you for taking two years to show that you might (kind of? Not really.) CARE about my husband's health.

K.W.

Tuesday, December 30, 2014

#DearVA My Own Illness...

#DearVA,

My own illness has made me take some time off from our posts, but tonight I am going to wrap up this long series on Gulf War Syndrome by focusing on our OEF and OIF Veterans.

Please #VA, explain why OEF and OIF Veterans are returning home with symptoms of Gulf War Syndrome?  The Federal Institute of Medicine says, "Preliminary data suggests that (chronic multisymptom illness) is occurring in Veterans of the Iraq and Afghanistan wars as well."

So, the question comes down, how can we help our Veterans? Not just Gulf War Veterans, but OEF and OIF Veterans as well? Do we treat each symptom?

#NewVA, this falls in your lap, and first you must stop the denial of these Veterans. What they are experiencing is so very real. Second, you need to start treating them, the whole person, not just symptoms, but mental and physical health.

All, that is right, all of our Veterans deserve to have this issue looked at. Please don't push it off any longer.

PM
Caregiver
Spouse to a Gulf War Veteran


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#Dear VA,

Yesterday, we got a letter in the mail from you. It was short but sparked some issues in my Veteran. 

The letter simply said, "We have received your application for benefits. It is our sincere desire to decide your case promptly. However, as we have a great number of claims, action on yours may be delayed."

Sounds simple enough but we have a few issues with this. First of all, this "application for benefits" and "claim" was not begun by us. We did not want to have to worry about the benefits that my husband earned.

Rather, YOU decided to reduce my husband's benefits. YOU started this new claim for reduction, on our behalf. Guess you probably have a great number of claims to reduce, hence ours being delayed. This is YOUR problem; YOUR instigation. While we didn't have a great rating, it certainly isn't as much each month as my husband would've brought in if he could work (and seriously, if he could work and I could work, we would be in a far better financial situation, so believe me when I say that this life is NOT our first choice), we were accepting of the rating that we did have, so for you to choose to reduce his rating, claiming that his condition has improved (when you didn't re-evaluate him to come to this conclusion) and then to send us this letter... salt on the wound.

So I'm wondering if this is going to be a normal thing for the #NewVA - deciding to reduce Veteran benefits, then send letters claiming a "sincere desire to decide your case." 

That statement brings us to the second issue with this letter. The wording. Having a "sincere desire to decide your case" on a reduction of benefits case that was started BY THE VA, certainly makes it seem as if the decision has already been made. 

So here we are, a Veteran and his family, where the Veteran is unable to work, the wife is a full time Caregiver and unable to work outside of the home, sitting on edge, wondering when the fight will end. Wondering when the VA will actually show "sincere desire" to care about Veterans.

K.W.

Monday, December 29, 2014

#DearVA Things I Wish.

#Dear VA 

Things I wish

1) I wish I wasn't the only one that understands the severity of my husband's disabilities but I'll accept this role forever as long as I am not continually tossed road blocks to getting him the care he NEEDS. When that happens I have to make a lot of noise and make everyone who stands between my husband and his needs, aware of exactly how disabled he is.

2) I wish my husband's doctors did not talk to me like I am an idiot. I only interact with and monitor him constantly even while at work (Skype) but I'll accept that treatment forever as long as my husband's voice is heard and respected.

3) I wish I didn't have to worry that one day my husband's little bit of income is going to be taken away one day but I'll accept that possibility for now because I will find a way to help us thrive so that one day we won't have to worry what the heck the VA does.

4) I wish my husband wasn't disabled. I wish he could walk like a normal person. I wish he could just get dressed, just walk up the stairs, just remember to do tasks, just enjoy his hobbies, just get in a vehicle and drive, just go and do work of any kind but he can't do any of that; and I'll accept that forever because disabled people have much to teach us but I know he wishes all of those things more than anything. More than you don't want to pay him to compensate for his injuries acquired at war that make work of any kind impossible; more than all of my wishing. My husband wishes he could just be normal and not disabled.

~M.E.


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#DearVA

            Yes, I'm writing you two letters today.  Because, in investigating your aforementioned screw up, I found another one.  Now, I am not a frustrated veteran's wife...I'm angry.  I am very, very angry.
            My husband filed for his disability in November of 2012.  We got the approval paperwork in October of 2013, which stated that his benefits were to be backdated to the date of original claim.  Now, to my understanding, that means a lump sum for the total amount of benefits from the date of filing to the date of approval.
            We have yet to see a dime of those benefits.  I understand that he has to pay back separation pay from when he came off Active Duty.  In the letter you sent us, we were told that you would continue taking his entire disability check until his separation pay minus taxes was paid back.  Well, that's already happened...and yet you're now telling us that you're taking the gross amount he was paid...instead of the net.  So my husband, who fought in the name of freedom...who has nightmares every night...who can't get stuck in traffic without having a panic attack...who looks for every exit before fully entering a room...has to pay taxes TWICE?!?!?!
            It's bad enough that you LIED about the dates he was enrolled.  But now you're taking the disability that YOU promised him.  You have effectively tied our hands and made it impossible for us to do anything better for our family.
            And would you, #DearVA, like to know what the worst part of this whole nightmare is?  The plain and simple fact that my husband's case is not unique.  It scares me to know how many heroes and their families are suffering, especially right at Christmas, because you can't get your stuff together.  You can't fulfill the promise made to these brave men and women.  Classic.

Sincerely,
Yet Another Veteran's Wife Having To Do Your Job For You And Pissed About It

Sunday, December 28, 2014

#DearVA Things I Don't Understand.

#Dear VA

Things I don't understand

1) Why Bob does not consider family members and caregivers that monitor and assist disabled Veterans on a daily or sometimes hourly basis like in my home - important enough to be mentioned in The New Road Map for the VA.

2) Why my husband isn't allowed to see his therapist one on one more than once in awhile even though he has repeatedly requested private therapy.

3) Why my husband's therapist feels she is being ethical by towing the VA line and saying my husband is doing okay instead of fulfilling any of my husband's requests for more mental health help.

4) Why my daughter who is almost 2 years old still has not been added as a dependent.

5) Why my husband's "Blue Button" records contain some information but not others. Records of some appointments but not all. Some "secure messages" I have sent but not others, particularly ones that have questions about medication mixture safety.

6) Why politics and bureaucracy are permitted to hinder the HEALTHCARE of the people that we have asked to sacrifice for our country.

7) Why a national registry has not been set up to track the serious illnesses, diseases, and disorders of military spouses and children.

~M.E.


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#DearVA,

            Thank you so much for screwing our family a week before Christmas.  Thank you for keeping false records on file, despite being given documentation that states otherwise.  Thank you for screwing us out of benefits that YOU say my husband have earned.  And thank you for refusing to do anything to fix the mistake.  Truly, we appreciate it.
            Yet again, because of a combination of your ineptitude and my husband's diagnosis, we are homeless.  We being my husband, myself and our 3 children.  Because of your ineptitude, we have no clue how long it's going to be before we can dig ourselves of yet another hole.  So, yeah, thank you for that.
            All my husband wants to do is better his education so he can provide for his family.  But when you screw up his enrollment dates, then say that HE owes YOU over $3000, it makes him want to quit.  I mean, after all, what's the point, right?
            Then you ask why haven't we filed the paperwork to make me his fiduciary so I can handle all the finances? Oh wait...that's because you won't listen to me when I try to tell you what's going on with him.  Why would you, when I'M the one with him day in and day out?  Why would you, when OUR FAMILY are the ones to suffer every time there's a screw up.
            #DearVA...I sincerely hope that you, whoever reads this, enjoys your nice Christmas in your nice homes, sleeping sweet dreams in your nice beds.  And I pray that you NEVER have to suffer, the way my family has, because of other people that simply do not care.

Sincerely,

A Frustrated Veterans Wife

Saturday, December 27, 2014

#DearVA Things That Wake Me Up At 3:30am.

#Dear VA

Things that wake me up at 3:30am


1) How am I going to pay all of our bills? Especially our medical bills. When am I supposed to have time to pay these bills? I work FT and care for my husband full time and we have 3 kids. I don't get breaks. You can't believe how hard it is to live on a budget with a person who is in and out of a triggered state all day long. Every day is about getting from one hour to the next.

2) How am I supposed to do most of the housework too? He helps where he can but it isn't enough to do more than just keep my head above water IF nothing else goes wrong or needs to be done. Or to allow me time to do other things.

3) Getting kicked or whacked by flailing arms.

4) His voice screaming INCOMING!!! as he throws himself out of bed. 

5) Where did he wander off to again in his sleepy stupor. He wakes up every 10 - 30 minutes from nightmares. Half asleep he wanders around the house doing random things half asleep. So when I jolt awake after passing out at the end of my 20 hour day - I have to check to make sure he didn't drive off, didn't set anything on fire, didn't wander off, didn't drop pills on the floor for our toddler to find, fall asleep with some kind of liquid in his hands and make a huge mess that will result in him having a huge meltdown.

~M.E.



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#DearVA, 

I know it’s a tough time of year for many vets, mine included. It’s just really hard for them to force the jolly expressions and happy faces. And it’s even harder to be asked repeatedly to go to large gatherings. Family or not, it’s overwhelming and many of them end up feeling so guilty about always saying no that they eventually say yes when really they shouldn’t have. They should have stuck to their guns and had small family events, which can be so much fun and just as festive. We know you miss us and that you want to see us. But maybe you come to our house for a visit instead of asking us to visit with everybody else when it’s loud and crowded and everything is out of control and unpredictable. Things that are funny and surprising to you are shocking and scary for a person who’s already over stimulated and on edge. 

But really, the hardest part of the season is to hear my husband say that he doesn’t love himself, he hates himself. He hates who he is now because it’s not him. The him he knows and wants back doesn’t have to take medication. The him he knows goes to social gatherings and is the life of the party. The him he knows gets very festive and would love nothing more than to go out and score the hottest gift on the kids’ wish lists this year on black friday. But the him he is now… can’t do any of that. It was a major feat that he helped decorate the tree with the kids this year. I still buy all the gifts (including my own) because he gets so overwhelmed and confused and then angry at himself and he just can’t do it. It’s the “hate” that kills me. He has so much disdain for what he is now. I remind him that when I see him I see the man that I love and a man that has so much to offer this world and who deserves all of the wonderful things we have. He deserves our beautiful family and my love and our home and pets. He deserves so much more. 

It’s really hard to not be able to give the gift that he really wants. I can’t take it all back and I can’t bring him back to his former self. All I can do is keep giving the gifts of love and support and encouragement. To remind him of all the good he does and why he DOES fit in with parts of his world. I admit that he doesn’t fit in with the general public… and not in regular social settings. But in very specific and controlled groups he does fit in. I also wish I could give him a friend to hang out with for Christmas. You’d think with all the groups at #VA he could find somebody to hang out with but those groups are all support or therapy groups. We literally need just a socialization group at the #NewVA. A group where there are projects to do, stuff to learn where it’s okay to get upset and frustrated but where you can do all of this with other vets and help learn how to make friends… and how to nurture a friendship… how to keep it going on your own. I know it sounds like the silliest thing, but it’s high on my wishlist. Please, #NewVA, teach my husband how to interact again. Teach him that people won’t always call him, that he has to call (or let’s be honest, text because they’re more comfortable that way) sometimes and that it shouldn’t end there. Those texts and calls should lead to plans. Plans to do something with another person! Once they are doing stuff together, the talking and healing and understanding can come out on it’s own. 

I just want my husband to know and feel how important and lovable he is. I want him to be glad he’s here rather than just holding on for us. 

Sincerely, 
100% Navy Wife

Friday, December 26, 2014

#DearVA The Rabble Rouser It At It Again.

#DearVA,

The rabble rouser is at it again. I have done quite a bit of research today on the things that you gave our Gulf War Veterans, and you should be ashamed of yourselves. Not ashamed that you tried to protect them, not ashamed that you gave them medications that even the FDA has not approved, but ashamed that after giving them these drugs you let them go with no warning that this could seriously mess them up.

Pyridostigmine Bromide Nerve Gas Antidote,or as my Veteran calls it, "The big horse pill."  Let's start here. This pill was to protect against exposure to nerve gas agents, pretreatment if you will. It has been used since 1955 for patients suffering from myasthenia gravis. Initially it was thought that the use of PB was casually associated with Gulf War Syndrome, but a later review by the Institute of Medicine concluded that the evidence was not strong enough to establish a casual relationship.

Organophosphate Pesticides. Several studies have shown that the pesticides used were not approved for human use by the FDA. Pesticide use is currently one of only two exposures identified to be significantly associated with Gulf War Syndrome. Pesticide use during the war has been associated with neurocognitive deficits and neuroendocrine alterations in clinical studies.

Sarin Nerve Agent. Chemical detection units from Czechoslovakia, France, and Britain confirmed chemical agents. The US has waffled on this fact. When the Iraqi Depot in Khamisiyah was destroyed, over 125,000 US troops and 9,000 UK troops were exposed to nerve gas and mustard gas. A 2008 report says that the "evidence is inconsistent or limited in important ways" if the exposure to low-level nerve agents could contribute to GWS.
Oil Well Fires. "At times, the sky was dark as night." My husband remembers the fires so vividly. The 2008 report States that "evidence is inconsistent or limited in important ways."

Depleted Uranium. Anthrax Vaccines (not FDA approved). Combat Stress.  It all goes the same. "evidence is inconsistent or limited in important ways".

#VA, What does that even mean?

I can tell you what I hear... "Congress didn't care enough about Gulf War Veterans to increase the funding for research, so we honestly don't know why the Gulf War Veterans are getting sick."

So, I have covered what Gulf War Syndrome is. I have covered what the possible causes are. Tomorrow, I am going to cover how the families are suffering.

I don't even have a job for the #NewVA. You should have gotten off your ass back in the 90's to start looking into this. No, you know what #NewVA, stop giving our Veterans medications and Vaccines that are not FDA approved. I hear from my husband all the time, "We are equipment,"  but you know what They are human beings. They don't deserve this. Those 22 a day, their blood is on your hands.

PM
Caregiver
Spouse to a Gulf War Veteran


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Dear VA

Get caught up on claims.  Then we can talk. 

Seriously.

EB

Thursday, December 25, 2014

#DearVA Today I am Tired.

Hello #VA

Today I am tired. I am frustrated that our version of normal is so different than most other families. I am sad that another year has come that involves us putting up the tree, while he sits in the dark in the other room. 

I hate that we have to have a fake tree, because it has to be something my children and I can wrestle into the stand and up ourselves. 

He's in too much pain to lift it. The holidays make him sadder than usual.

No place like home for the holiday's sounds so nice doesn't it?

It would be a great idea for the #NewVA to put together some sort of resource for Vets around the holidays... or if not for them, for the families of vets. It'd be nice to have known years ago it wasn't just our home.

~Blue Christmas


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#DearVA,

I just don't have it in me to fight much anymore. Over the next few days I am going to talk about Gulf War Syndrome. My husband, a Veteran, has asked me to cover this issue, because while you acknowledge that it is a very real thing, you are not covering many of our Veterans.

So what is Gulf War Syndrome?  It is a chronic multisymptom disorder affecting returning military veterans and civilian workers of the Gulf War. A wide range of acute and chronic symptoms have been linked to it, including fatigue, muscle pain, cognitive problems, rashes and diarrhea. Approximately 250,000 of the 697,000 U.S. veterans who served in the 1991 Gulf War are afflicted with enduring chronic multi-symptom illness, a condition with serious consequences.  Suggested causes have included depleted uranium, sarin gas, smoke from burning oil wells, vaccinations, combat stress and psychological factors.

In 2008, an independent congressionally appointed committee recommended that Congress increase funding for research on Gulf War veterans' health to at least $60 million a year. This was denied.

Further strides have since been made by Representative Mike Coffman, a Marine who served in the Gulf War. Congress currently allows funding of $15 million for research on Gulf War Syndrome.

As Gulf War Syndrome is a chronic condition, the VA requires 6 months of documentation to "prove" it is real. There are several problems with this, as I will explain over the next few days.

There has also been requests by Gulf War Veterans to have research done into their children's birth defects and spousal sickness, which I will also go into more detail on in the next few days.

I would like to see the #NewVA take a closer look at what is going on with our Veterans as they return from Combat. There should be a method to follow up with them over the course of years, whether it is as simple as making them a PCP appointment, or even a survey which can lead to a PCP appointment. You can't let them just disappear. Our Veterans need you.

PM
Caregiver

Wednesday, December 24, 2014

#DearVA Hello Again...

#DearVa

Hello again #VA. I would like to encourage you today to learn how to manage your telephone system. After many years running call centers around the globe, I would be happy to donate some time to assisting you in setting up a functional and adequate staffing plan and if necessary IVR to control your call volume. I figure I can volunteer approximately 48 hours a year and still be gaining time in my life if I fix your phone system.

At least once a month I have an issue of some sort, either with your benefits office, or your medical department or records, each call takes multiple calls, sometimes hours of being on hold, I get disconnected nearly every time I call and I figure that each instance averages out to approximately 4+ hours. Multiplied by 12, that brings us to at least 50 hours a year.

I could certainly solve your phone problems in that time. If not, perhaps the #NewVA is interested in looking to resolve this for us, so that we can reclaim the equivalent of a work week from the labyrinth of your ineffectual phone system.

Thanks!


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#DearVA,

Another day, another month, another year. It really all does seem to blend into one another and before you know it a great deal of time has passed. My husband has been out of the military for almost 7 years now. He’s been seen at our local #VA for about 5 years now. It took us just shy of 2 years to get his #VA benefits straightened out through a series of evaluations and appointments with people he’d never met or heard of before. We found it odd that people who spent a grand total of one hour with him got to make decisions about his future. He was so wracked with anxiety and suspicion that when the day came he told me, “Fuck it, they want to hear what’s going on inside my head, I’ll tell them!” He went in and unloaded everything, unburdened himself for a moment, broke down in tears and begged for it to be done. This is how he relayed it to me as I was not allowed to attend with him. This confuses me as he often times gets his words all tangled up and can’t express himself, or he refuses to allow people to see him at his most vulnerable, or he simply doesn’t remember. His greatest fear is that when he can’t remember something his evaluator will think he’s faking some of his symptoms. I am his memory for him. I cherish the fact that he remembers exactly two moments from our wedding almost 9 years ago… two moments. He remembers a little more of our daughters birth from almost 5 years ago. Sometimes somebody will say something and it will trigger a memory and he enjoys that. He laughs and tells stories when he remembers them. I enjoy that too. I like it when he tells his crazy military stories because it reminds him of so many friends that he doesn’t get to or can’t see anymore. Friends are difficult for him. He doesn’t really have any anymore. His only social outings are events that I set up and attend with him, with other vet families. He does not set up excursions himself, does not call people (again, his words get jumbled and he refuses to talk on the phone because of it), he doesn’t seek out activities. The hardest part is the depression he feels when I go out with my limited number of friends. I might not have a lot anymore because I often have to cancel plans or just can’t make them in the first place. But when I go out and come back happy and telling him of my adventures he really gets depressed and misses the camaraderie that he just can’t seem to find again.

I am rambling. It tends to happen when I talk about my husband and how he’s doing, what his life is like. The point I was getting to, #NewVA, is that there are several signs that indicate a likely TBI within my husband. But it seems that the moment his PTSD was diagnosed, the TBI didn’t matter anymore. But it does, they’re not the same and they don’t take the same treatments. Once, several years ago, we were referred to the Neuro Psychologist. We were glad that he’d finally be tested and have some answers and a plan of action. But that appointment was cancelled and pushed out another couple of months. We waited some more. That appointment too was cancelled and rescheduled a couple more months out. I don’t really remember how long we’d been waiting, but I do know that we finally made it to the day of his appointment… and then the phone rang at 7:30am. Our appointment was yet again cancelled…. and it never got rescheduled again. We are going for another annual check up with the primary care doc and we’ll ask about it again. But it’s been a couple years and several times this has been mentioned and nothing has been done. Nobody is interested. The worst part, in my opinion, is that when our friends have been scheduled to see the new Neuro Psych at our local #VA, they are specifically informed by a #VA employee that if you even mention “TBI” the doctor will kick you out of her office. She then refers those patients to another doctor on the other side of the state… 6 hours away. And that hospital is so overwhelmed (due to this practice) that they don’t allow anymore referrals from her… and if they did, it would again be months and months away. So exactly how is my husband supposed to get tested for or treated for TBI? And how is it possible that this doctor is doing her job if she refuses to see patients for a very common affliction? I just don’t understand. And how much research are we spouses expected to do? How much time are we to devote to learning what needs to be done, who needs to be seen, writing letters and advocating, re-setting appointments, and literally harassing employees to get our vets taken care of? It’s too much, that’s the answer. It’s exhausting and infuriating and leads us to feel helpless fighting a giant that has more resources and seemingly no accountability. We make friends with other vet spouses not just for the understanding that they have, but also to help ease the burden of research and requirements. We are forced to form our own sort of unions to help figure out what to do, when to do it, how to do it and if we are even able to do it? Deadlines, red tape, more research, more advocating, more letter writing… this is what our daily lives look like outside of actually physically caring for our vets. People talk about what amazing people we are and how the job that we do is so important and what angels we are. So why does the #VA make our lives so much more difficult. Why is the one entity that should be our ally feel like an enemy? I’ve often said that I feel like the #VA caused a car accident with us and they’ve got dirty lawyers that we’re fighting for years on end as they try to cause us to give up. I’ve managed this far, I don’t intend to give in any time soon.

“They thought they would bury us, but didn’t realize we were seeds.”

Sincerely,
100% Navy Wife

Tuesday, December 23, 2014

#DearVA Previously I Talked About Missing Things...

#DearVA, 

Previously I talked about missing things, missing spouses that are deployed repeatedly, missing the feeling of normalcy, missing family cohesion. But there are more personal things that I miss. I miss sleep. This is a statement that could be made by so many combat vets, but also by veteran spouses. My husband takes medications to help with his nightmares. He takes medication to help him get to sleep and he wears a CPap mask to bed too. All of this is in an effort to gain some amount of quality sleep. When he did his sleep study he was told that he was getting maybe 15% quality sleep a night. He was told that with the CPap he should wake up feeling refreshed. This is still not the case. This is something that has been discussed with his #VA prescriber for more than a year. They keep telling us to change our sleep hygiene routines. They ignore the fact that I massage my husband’s shoulders and head every single night to help him relax and ease him into sleep. And that I can not go to sleep before him because I am the only person that he trusts to ensure his safety when he’s drifting off to sleep. He knows that if I hear a suspicious sound that I will let him know so he can check it out so he won’t be surprised in the middle of then night. So if he’s not tired, I can’t be tired. And when our preschool aged daughter wakes up, he can’t go to her because he’s taken his medications and he’s wearing his mask and, lord help me, if he’s actually getting good sleep I don’t want to disturb it. So I take care of the kids if they need something in the middle of the night. And our aging family dog often needs out in the middle of the night, I take care of that too. And when he has thrashing nightmares or jumps in his sleep, I wake up and I wake him gently by rubbing his arm to rouse him from his dream and reassure him that he’s home and that he’s okay. And then I massage him back to sleep again. At least one of these things happens every single night… often times it’s more than one. I haven’t had a solid night of sleep in a couple of years at least. I have been away from my family exactly 3 times in 5 years for a grand total of 7 nights. I know that sleep was always high on my list of priorities when I am away from home. But that comes with stress too. Because even if I have placed somebody in our home to take my place, they won’t massage my husband to sleep and he won’t sleep virtually the entire time I am gone. The other person is there to take care of the kids as he gets less and less sleep. And when I return home he is exhausted and out of sorts and he will be in and out of bed for a couple of days to try and get back into his normal existence. 

I’m so tired. #VA talks about respite and how important it is. But it’s often denied and it almost doesn’t even matter. How is there rest to be found when there is a stranger in our home and my husband is not comfortable and does not trust them? Should I throw all of those thoughts to the wind? Should I just not care about it? I know you have to “put your own air mask on first,” as the saying goes, but it’s so much easier said than done. Yes, it makes sense, but the reality of it is difficult. #NewVA, we need people that understand our struggles and can help us find solutions. Like events where we can get to know a specific pool of caregivers for respite… spend time and do an activity with them or something so that the vet’s can feel comfortable with them and have a preferred provider even. Make it feel like a community and not just a random stranger that’s been sent to your home. Stop offering us solutions on paper. We need real options that have actually taken our needs into account. Doesn’t this make sense?? When a woman has a baby she doesn’t want just any doctor to deliver her baby, she wants the person she knows and trusts. In an emergency the “any doctor” will work but when we’re talking about respite, it shouldn’t get to emergency stage and yet so many of us are there and we live there all the time. 

I miss sleep. I miss my eyes that already look many years older than they are and will no longer recover without medical intervention. I’m not exaggerating, my eyes have deep hollows under them from lack of sleep, from rubbing sleepy eyes and from long days of worry. The hollows are no longer a glowing shade of flesh but a much darker and seemingly permanent bluish. It sounds frivolous but so much has been taken from us that yes, even something as silly as our appearance has ripple effects through our entire beings. It takes away one more of the little things that we may have held onto as a bright spot in our lives. I miss sleep and I miss looking well rested. I’m tired of hearing “how are you? you look tired.” I look tired because I am tired. I will never again not look tired. Thank you for the reminder. 

Sincerely, 
100% Navy Wife


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#DearVA

Hello again #VA! Today, I thought I'd change it up a little and share with you a little thing my husband actually put together for you.

He calls it "The 5 things I've learned from the VA"

1. The VA isn't actually interested in trying to help someone get better. They want to do as little as possible by managing your symptoms in a revolving door cycle. 

2. VA does not know how to do math. This is highlighted by shortchanged meds, the inability to schedule basic appointments and their disability rating system where 60%+60%+70%=90%

3."Your appointment will be scheduled" means "when hell freezes over"

4.Unlimited minutes on my cell phone is a good thing. (I use most of them on hold)

5. The VA doesn't actually want you to get better. Oh, he has PTSD, he forgets things but if you'd actually scheduled his appointments you'd probably remember that.

The perception by Vets is that the VA is not where you get very good care. Hopefully the #NewVA will start the road to change.

Thanks for listening!

signed- A Vet's wife

Monday, December 22, 2014

#DearVA I had Some Good Conversations...

#DearVA,

I had some good conversations yesterday with Veterans through Facebook. The main point was Veterans who don't push to help themselves, and I do think that this is a problem. A Marine raises a good point, that the Veteran has to push and push and push and be their own best advocate.

Here is my problem #VA...

You allowed a young man to join the Navy. He doesn't have the life skills to advocate for himself. He doesn't know how. He tells you that he is suicidal, you push some pills at him, and assign a woman to talk to him who is not a therapist.

This is not acceptable.

The #NewVA needs to recognize that not every Veteran knows how to be their own advocate. Don't dismiss a Veteran by pushing pills at them. For heavens sake, when a therapist leaves, have a replacement ready for the Veterans who need them.

PM
Caregiver


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#DearVA,

Today let’s talk about missing. I spent so long missing my husband when he was sent overseas again and again and again. And when he wasn’t being sent overseas he was being sent all around the country for trainings and tests. In the first 3 years of our relationship we weren’t even in the same state 15 months let alone in the same city. We were married for a full year before we ever had the opportunity to live together. And when he came home, I still missed him because he had such a hard time being a part of our world. He was so accustomed to being gone and being a “geo bachelor.” Can you imagine what it’s like to be suddenly dropped into a house that is covered with kids things and another person’s work stuff and pets and all that comes with these family trappings? Can you imagine being accustomed to a very sparse existence with everything neat and tidy in it’s place (as you’ve been trained that they should be) and then find yourself in the middle of the calamity of school days and homework and toys and playdates and people who need your time and who need you to be flexible with your time and go at the drop of the hat because that’s how family life can be? It must feel like being dropped into some kind of Willy Wonka world where nothing makes sense because it’s not your world, it’s a families world… it belongs to many and not just to one. We still struggle with this. My husband is an early riser, long before anybody else in the house. So he has plenty of time to leisurely get himself ready, drink his coffee, read the news, etc. By the time the rest of the house is getting up he’s ready to go, go, go. He doesn’t always realize that everybody else is still getting themselves together for the morning and that not everybody has eaten breakfast, not everybody is ready to go, go, go. It’s really difficult to live in a home that feels like it has two different time zones. You always feel late or ridiculously early… and sometimes you just don’t even know which it is.

I guess what I’m trying to say is that my family misses feeling like a whole solid unit. We feel like a whole unit made up of mismatched pieces and shapes that don’t form a complete circle but more of an ever changing shape that has bulges and divots. This is something we hope that #NewVA will understand and address. We’ve been working at this for about 7 years and we still don’t feel like a circle or a square or just a family yet. #VA has not provided us with help as a family. There have been no offers of help for our children to understand what’s going on with Daddy. There’s no help for me, as a wife of a wounded vet, or as the mother of children who live in a household like this. Why is there no family services available? Or if there are, why are they not reaching out? We are tired and exhausted and have no idea how to deal with this other than to trudge on. Keep putting one foot in front of the other and hope it gets better… hope the grass gets greener or the trail finds a downhill slope that is easier to traverse than the uphill battle we’ve been fighting.

We miss feeling like a normal family. We miss feeling like a team all working towards a single goal as a family rather than all working towards the singular goal of being a family. We hate trying to explain to people that we spend a lot of time trying to seem like a normal family, like we’re not different. We hate having to explain why our schedules are much stranger than many families 9-5 schedules. Why we are often home during the middle of the day, why we don’t attend regular functions like the other families, stuff like that. #NewVA, do you know what it is to explain your life every single day? Do you know what it is to justify your very existence to the people that are supposed to understand and help you? Do you know what it’s like to continually “interview” and retell your story over and over again? We do. We miss feeling normal.

Sincerely,
100% Navy Wife

Sunday, December 21, 2014

#DearVA Addiction to Drugs...

#DearVA,

Addiction to drugs, alcohol, sex, but more specifically things that move the adrenaline again...

Oh yeah, I am having this topic tonight. I have a friend. He is addicted to alcohol. I blame you as much as I blame him. You see #VA, while he never saw combat, he started getting that adrenaline rush while you trained him in boot camp.

Now that he is a "normal civilian",  he seeks to recreate that rush through drinking, drugs, and several suicide attempts. Where are you #VA? He tells you about these issues, and where are you? You aren't helping him, obviously.

The #NewVA needs to realize how many Veterans get out and seek to recreate the rush. They should be following up regularly with Veterans who have attempted suicide. A Veteran who says that they have a problem with alcohol or drugs should be referred to programs that can help.

Friends and Family are not equipped to be therapists #VA. It is time for you to step up.

PM
Caregiver

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#DearVA,

This week finds me scolding my child for losing valuable objects and nonchalantly moving on with his life as if it isn’t a problem to no longer have those items or to come up with funds to replace those items. In fact, currently those items will not be replaced in order to help him learn to take care of his things and take responsibility for his actions. These are the life lessons I am currently teaching my 13 year old. It saddens me to see how these same lessons don’t seem to pertain to the #VA. I am dismayed at the stories I hear of vets not getting the care that they have earned and even that is specifically noted within their files. It’s disheartening to hear of caregivers reading through their husbands book like medical files only to find critical information that is years old that was never divulged to them. If the VA were my 13 year old, the valuable items would be our vets. They’re not being taken care of and they’re being lost. And nobody is taking responsibility for this. This is probably one of my highest top priorities on my wishlist for #NewVA, accountability.

Accountability doesn’t just mean taking responsibility for your actions but also for your inaction. It means that there should be some recourse for those that are mistreated and left in the dark. I hear stories of vets with issues so large that their only recourse is legal action and yet the VA is such a large organization that you can’t even get legal representation unless you have endless bags of money and no sort of timeline. The #VA is a Goliath and our David has the rocks to throw (in the form of medical records as evidence) but no slingshot willing to hold such a large load. It is unconscionable that this goes on. That vets are mistreated or not treated at all and all they can do is file a complaint with the patient advocate only to never hear anything back. There is no recourse for the staff that leaves them in pain because the #VA can’t afford the loss of staff members. And the staff that does want to help is limited by internal protocols that leave them no options but to deliver less than adequate care.

Obviously I don’t mean that this is happening to every vet every day, but it is happening at an alarming rate and as I said, there’s not much a vet can do about it. What kind of faith can a Vet have that they’ll receive quality care and that issues will be solved if there is a problem. They can’t. I read an article once that stated that most vet’s who are 100% disabled are likely faking it because as soon as they get their 100% rating they stop getting treatment. This is false, the truth is they stop getting treatment at the VA. Once a vet has a 100% rating they often qualify for Social Security disability and are then afforded the luxury of Medicare. Medicare allows them to see doctor’s that are held to a higher standard than the VA doctor’s. Doctor’s that they can file a complaint about if there is wrong doing and there is a much higher likelihood of repercussions. But most importantly, they get to see doctor’s that are much more likely to share openly and freely with them about their own medical status and options without protocols and limitations. They adhere to their oath more stringently than many that work at the #VA. This is the reality that we face. We are literally dying to get care outside of the VA where we have a better chance at living longer and in less pain.

#NewVA Wishlist: Accountability.

Sincerely,
100% Navy Wife