Friday, June 13, 2014

Some people have asked, so I'm sharing this-

I was interrupted a few times while typing this and I'm two hours past my nightly pain meds, so please, forgive any grammar, punctuation, or whatever mistakes.

Lately, I've been asked what we think of the recent issues with the VA that have been in the news. For the most part, those issues don't have an effect on us because he's already "in the system". The biggest issues right now seem to be with incoming vets.

But, I will say this- it is nothing new. When Jerry had his stroke, he was out of the Army for six months and ten days. That "ten days" took more than two years of me filling out forms and writing letters to congressmen/senators (by the way- never heard anything back from any congressman/senators we had in Georgia- where we lived- or in Wisconsin- where we ended up living), and going to the random appointments. We once had to drive two hours to Charleston, South Carolina from where we lived in Georgia for a doctor's appointment. It was scheduled at 8 AM on a Saturday. So, I had to get up, get three kids (aged 6 and under) and the disabled spouse all ready and then load them up in our vehicle and drive into an unfamiliar area with just a truck driver's atlas as a guide (this was back in 1995).

Once there, we were put in a waiting room with about twenty others. After waiting about an hour, we were then told to follow them (two nurses and a man in golf clothes who turned out to be the doctor. (by "golf clothes" I mean a polo shirt with golf balls and clubs all over it and khaki trousers. He had sunglasses on his head as well). I told them that Jerry couldn't walk fast, he'd had a stroke. But that didn't stop them from charging down the hall at a speed even a child had trouble keeping up with. Luckily, some of the other vets created a "chain" in waiting at any turned corners so we wouldn't get lost along the way to another waiting room.

When we were finally taken in to the exam room, it wasn't even an actual examination room. It was an office without any medical equipment.  During this "exam" to determine if Jerry was indeed disabled, the doctor asked him his name. He answered. Asked which branch of the service he was in and he answered. Then he pointed at the phone on the desk. Jerry answered. And it went on like this- the guy pointing at random shit around the office and sometimes throwing in questions like "Who is the president of the United States?". Jerry called a computer monitor a TV and he called the doctor's fancy wristwatch a clock. He called a few other things by an alternate name that sort of meant what they were, but you know... stroke victim.

And that was it. A few weeks later, we got a letter saying that he didn't qualify for anything the VA had to offer. The gist of that letter was: "Due to your time in the service, more specifically your time in the Operation Desert Shield and Desert Storm, you qualify to receive benefits from the Veterans Administration." And the next paragraph said: "Unfortunately, we have no benefits to offer you at this time." There was some other official stuff, "articles" and such (actions in the military are called "articles", like "Article 15" is an official reprimand. A movie that came out in 1992 called "Article 99" was referencing letters like this. Basically: "Congratulations! You qualify for benefits! Sorry, we don't have anything to give you!" But that's a pretty good movie- a little ridiculous at times, but hey, Hollywood, right?).

Some time later, we lost our home in Georgia and moved up here where my parents lived because my parents were helping us. I always tell people that we came to where the help was. My dad took us to see the VA rep in town (if you have a VA rep- and you most likely do- go to them, they know things we don't). I handed the VA rep the thick, heavy manila folder I kept with copies of everything I'd ever sent to the VA and any politicians I'd written to (snail mail, because who had a computer back then?). And I showed him the few things we'd been sent by the VA. He didn't even LOOK at it. He sort of flipped through and sighed. I told him about the trip to Charleston and showed him the "Article 99" letter.

The VA rep told me: "Stop sending them stuff. They have more than enough information."

Two weeks later, we had a letter saying Jerry had an appointment at the VA in Madison. That's about an hour away. My dad was in the system and he had me go with him on one of his appointments, so I could know the way there and where to go once we were inside. THAT appointment was an actual medical exam. They did a complete physical, made copies and kept the info from all the medical records we'd brought with us. They spoke with both of us, made assessments and told us they would contact us within six weeks.

And that was it. After that, we were "in the system". He had regular appointments. He had his prescriptions covered and all medical for him was taken care of. He was declared "50% disabled" at first. Then 75% and so on and so on, till he reached 90% disabled. And they stalled there. At 90% disabled, he got nearly everything in the way of benefits. Except for medical coverage for the family. And we had three little kids. I ended up having to call the main VA number and I managed to reach an extremely helpful person. It took a few more weeks, but we finally had medical coverage and I was allowed to fill out claims for any medical expenses going back for two years. (not everything got approved and it didn't change any of the bills that had already gone to collection agencies- hey, I was pulling in a mean $5.50 an hour back then).

So, from the time he had the stroke, it took me about six months to even find out that we could even apply- oh, I'd forgotten to mention that... I called the VA office in Savannah, Georgia and a woman told me: "Don't even bother. He won't get approved. Save yourself the heartbreak." I had a routine appointment with the Social Security Disability office and their person suggested we make contact with the VA. I told him what I'd been told over the phone and he was shocked. He made one call for me and got the wheels turning (as in- the first set of forms were mailed to us).

So- from the time I first filled out paperwork to the very first appointment, it was almost six months. It was another two-ish years before he was declared 90% disabled and another six months after that before he got 100% service-connected status. I'll be generous. Three years. It took almost a year to get "in the system" and another two before he was give the Golden Goose Egg of "100% Service-connected Disabled" status.

I did most of this on my own (there were no charities- at least none with TV commercials and junk mail like now). I filled out paperwork, paid to get copies made at the post office, I wrote letters (literal handwritten letters) to Washington DC. Those forms I filled out were repetitive. I still have most of that information memorized from writing it over and over and over. I had to get a certified copy of his DD-214 (discharge papers) which meant I had to go to the courthouse in downtown Savannah, pay for parking, pay the fee for the certification, and it was for no reason. Nobody needs a "certified copy" of DD-214s. (apparently). By the way, during this time, I was working third shift as a security guard. I had Mondays and Tuesdays off because that way I could schedule any of his appointments for those days and not miss my precious $5.50 an hour paycheck.

Anyway... three years total, but it took a year to get "in the system". And that bullshit appointment in Charleston where the doctor would have rather been golfing? That was over six months.

At each victory, we were completely thrilled. We never expected to get anything more, so we were happy with every little bit we did get.

So, the VA has always had "issues". But, I can say that the care he has gotten at the VA hospital in Madison has been very good care. My dad had good care through them as well. I also go to the VA in Madison because they have the spouse program for the spouses of 100% service-connected disabled veterans (but not for the kids, it was just for spouses- but we did have good medical insurance-like coverage for the kids with a 75/25 cost-share thing).

But, now that you've read the whole thing, I'm going to share these with you...

The other day, I explained to the Disabled Guy that I have a huge head and none of my hats would fit on him. So he let me take this photo. That's my Wonder Woman crush cap (which is in my Blogger profile photo).

Today, I asked him to help me with my 365 for Flickr. The theme was "Twisted Flickr" and I wanted him to "be creepy"... it resulted in cackle-laughing on my part and laugh-snorting on his. And this is today's 365 photo.

Sunday, June 8, 2014

A Cautionary Tale of "What the fuck were you thinking?!"

I'm not sure how much I swear on this blog. But I swear a lot in general and especially on my fibro blog. Today's post may include a lot of swearing. And I'm not sure how funny this will be. Because today was a long day.

Last night, my body had what I call "Insomnia Lite". My pain overtakes my pain meds and I can't sleep. I usually give my body a couple hours to settle in, just in case I do actually fall to sleep. But I usually end up getting out of bed and then whining in a blog post like I did last night. I finally got to bed around 4 AM. And, in getting to bed around 4 AM, I slept till 930 AM. After I showered and blowdried my hair, the Disabled Guy came into the room.

And he said: "I think I might be trying to have another seizure."

Me: "What makes you think that?"

Without looking at me, he said: "Because, I get this... this feeling... like jumping... in my gut. And it goes to my throat. It gets tight and then I can't control my motions."

Me: "When did you last not be able to control your motions?" (by the way, I wasn't dressed yet. I was standing there in my underwear and slippers).

DG: "Not the thing. I can't control my mo-motions. Like crying. I just cry for no reason and it won't go away." And he then proceeded to cry for a few minutes.

So, while I put my clothes on and tried to act like I wasn't freaking out, I asked him the usual stroke questions. "Do you feel weaker than normal on one side? Can you see with both eyes? What's your full name? What's my full name? What state do we live in?"

After each answer, he would repeat the thing about his emotions and his "jumpy feeling" in his gut.

After I was sure he wasn't having another stroke, I asked about his seizures. I've seen him have two full-blown seizures in our lifetime. And one of them he had that "aura" thing that some get. It was obvious then that something was wrong. But this time, he acted normal, except for the crying.

I told him we were going to DVR his race and go to the ER. He didn't disagree, so I knew he was scared. After getting my shoes on and taking the dogs out, I asked him if he wanted to go to the local ER or drive the hour to the VA hospital. He said he was good to go to the VA hospital. I told him that if he had a seizure while I was driving, I'd punch him in the face. He didn't disagree with that, either.

So... I had to stop and get gas in the truck and that's when I found out something. About six months ago, he decided he didn't like taking so many pills, so he cut his seizure meds dose by half. Instead of taking two tablets at night, he started taking one tablet. I wanted to punch him in the face right then and there.


The last time he was off the seizure meds was in 1997 when the VA hospital saw fit to wean him off Dilantin, "to see what would happen". About six months later, he had a full-out seizure, complete with the pre-seizure aura, and full-body flailing, including biting a huge gash into his own tongue.

At the VA hospital's ER, they asked him the usual questions ("Why are you here? No, I mean here at the hospital, not man's existence in the universe.") and he started to downplay it, like he does. (he once slipped on the ice and injured some ribs. When the ER doctor asked him how the pain was, he downplayed it, saying it wasn't too bad. I stopped him from talking, imitated a movie quote that I knew would make him laugh. The doctor told me it was a clever move and of course, he was able to see how much pain he was actually in). I interrupted his side-stepping and told the nurse what happened in our room where I was not yet dressed. I left out the "not yet dressed" part because I didn't think it was important to her.

She then started in on the psych eval to make sure he wasn't suicidal or hoarding his pills to attempt suicide. He hasn't been through that before. And I let her do it. He got flustered trying to explain himself and finally looked at me and motioned for me to take over (I usually take over without him asking, if I see him getting increasingly frustrated). After a few more questions, she was satisfied he was just a stubborn asshole and not a suicidal asshole.

When the doctor came in about ten minutes later, he did the same thing. This time, he looked at me, hoping I'd take over and I said: "Nope. You dug yourself a hole, you climb out of it." He managed to get through it and assured the doctor he was a stubborn asshole and not a suicidal asshole.

So, the Disabled Guy learned a few things. One- he is not a doctor or a pharmacist. Two- seizures can kill you (he never believed me when I told him that myself). Three- withdrawals from seizure medication can also kill you. Four- if you're a stubborn asshole who takes medications that are also a treatment for bipolar disorder, you might want to listen to your goddamn doctor and take your fucking meds on schedule.

He promised that he wouldn't do it ever again. He assured the doctor and nurse that he was just tired of taking so many pills. They were satisfied with his assessments (both physical and mental) and sent us home. He's taking his full dose of medication, of course. But they suggested he not handle his power tools in the shop for a few days, to make sure he's got his full sense back while the medication gets back up to the right dose. The doctor told him that he needed to discuss all things with his primary doctor. "If you want to change something, that's who can help you. You should never change things on your own." He's going to submit the report to the primary doctor, so we might have to go back next week for an appointment with him. But let me repeat something:


He takes lamotrigine, which, according to Google, is also used (in different dosages) to treat bipolar disorder. So, he was slowly putting himself through withdrawals, without the supervision of his doctor.

So yeah... I've had a very long day. I'm exhausted. While at the ER, he was weepy and a little scared. (as he SHOULD be, for freaking me out like that). He's fine now- watching his DVR'd NASCAR race.

This is the Disabled Guy, in the exam room, between the doctor's visit and the discharge orders.