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

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