No, it’s not fair. I have to plan accordingly.

person sitting on a park bench looking at a coming storm
Photo credit: Myshelle Congeries

I split my day yesterday between handling a Saturday conference call for work, and going to see a friend in the hospital who may be dying. It really wasn’t fair. To anyone.

The phone call happened at 8 a.m., when a co-worker called to ask me if I was going to join the conference bridge. Sh*t! I knew the call was scheduled. I’d been talking about it all week. But Friday night, my spouse got news that our friend needed to see us soon, so we gathered that they were doing poorly and we needed to see them one last time before they passed away.

Their whole situation has really sucked. They have an aggressive and rare form of cancer, and their numbers have been up and down over the past year. They underwent a last round of treatment — a last-ditch effort — and the results were not what the doctors hoped for. So, they’re preparing for the memorial service, getting their affairs in order, and seeing people one last time before they go.

That’s where my head was, yesterday morning. And it took my mind off my regularly scheduled activities, which included the conference call. That wasn’t fair to my co-workers, because I had promised them I’d be on the call at 7:00 a.m., but I didn’t show up till 8:15. I felt terrible about it, but we just had to dig in and take care of what needed taking care of. It sort of happened, sort of didn’t.

We’ll try again on Monday.

The trip down to the hospital, which is in the next state, also wasn’t fair to me. I was really worn out, in general, and pushing myself to help my spouse get their act together, while they struggled with all the emotional baggage, really over-taxed me. It was nothing new — that’s how things have been in my life, as long as I can remember. I’m just getting more clear about how unfair that really is to me. Avoidable or not, whether I want to do it or not, stuff will need to get done, of course. So, I can’t expect life to be fair to me, the way I’d like it to be.

The important thing is that I’m actually thinking about how it works for or against me. And I’m getting clearer on how to better care for myself in the face of life’s inherent unfairness.

And then there’s our friend. Their dire, extremely mortal situation is completely unfair. They’ve lived a good life full of compassion and service… and then this happens? Bizarre. Tragic. Unfair. And the financial burden on their kids, who have to pay for all the hospital bills (for a journey that isn’t ending up where anybody wants it to), is also deeply unfair. They should only have to pay for what works, but of course, they’ll have to pay for everything. And they’ll still have a massive hole left in their lives.

The whole thing really pisses me off. But that really only impacts me. It doesn’t change anything about life.

The one thing it does impact, is how I live my own life, how I know I have to take care of myself and make my own provisions and line up my own help in the way that I need, because my spouse really isn’t in any shape to come to my aid, if something really bad happens to me and I become incapacitated. This whole experience of watching our friend struggle through so much just re-emphasizes how important it is for me to take excellent care of myself. Because nobody else really can, the way I need them to.

And life isn’t fair.

So I have to adjust to that fact. I have to do everything in my power to keep myself in good stead… and also put supports in place that will help me, should I end up on my own and/or get into a situation where I’m no longer self-sufficient and need assistance.

I actually am pretty much on my own, anyway. But things could get worse for me. So much worse.

Plan accordingly, I tell myself. Plan accordingly.

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Finding new doctors this year

group-of-doctors
I just have to keep telling myself, They Want To Help.

I need to find a new PCP – soon. My doctor, who I really liked a lot, and who worked with me better than anyone else I’ve ever met, passed away last September. I am still on the books with the practice, and I was seen by the doc who runs the practice, who I do not like at all. When I was trying to get clearance for neuropsychological testing, I had to be seen by a neurologist, and the doc who runs the practice is the local “gatekeeper” for referrals.

My insurance at the time was terrible for mental health/neuro things, so I had to get special permission from my hospital system — and that gatekeeper tried to stop me from finding a specialist in a nearby city. They wanted me to stay within their provider network. It’s great requirement for the business side of the hospital system (they nearly went bankrupt, 10 years ago), but it is a terrible idea for patients who need specialized help that can be found quite easily at locations less than an hour away.

So, I’m not a fan of that doctor. I’m not sure if they realize how much I detest them — I didn’t let it show, when they gave me my annual physical last fall — but I hope I never need to explain that to them.

I just need to move on.

Additionally, I have to find a new neuropsychologist, as my current one is retiring in a few months. I’m pretty anxious about this, because I completely lucked out that I connected with them at all. They have offered to help me find someone new, but in the past, they’ve been pretty unreliable, and they’ve also  steered me towards people who just weren’t good matches for me.

So, I’ve got to start that process again. The last time I went through it, it was stressful and somewhat traumatic. Insulting. Humiliating. Depressing.

But that was over 8 years ago, when I was still in a pretty dense fog from my TBI in 2004. That’s changed. I’ve changed. I can do this… I have to keep reminding myself.

Because I sometimes forget.

Anyway, it’s turning out to be a decent day. Time to get out in it and have some fun!

Onward.

The worst thing about trauma

It hits at all levels

Just a tip — if you have a weak stomach, don’t Google “trauma” and look at the images. I just did, and I regret it.

Anyway… I’m writing this ahead of time and scheduling it to publish while I’m way. By the time you’re reading this, I’ll probably be on the road, off to collect the rest of the crap from the smashed vehicle my spouse was in. Again, I am so grateful things didn’t turn out worse.

Still, it’s a sh*tty way to spend my day off. Especially when I was in such need of downtime, having been really sick all last week.

So much for that.

To be quite honest, the hardest part about the whole thing was that everyone had to emotionally process everything. They had to call their friends, talk to everybody they met about it, recount the experience, get sympathy from people, have an “emotional release”… and do it all over again. And all the while, the friend’s smartphone kept going off and dinging with every text that would come in, setting off the most irritating set of ringtones I’ve ever heard, and not giving me a moment’s rest. Driving a long distance on very little sleep, having that smartphone go off every 15 seconds was nerve-wracking, to say the least. It was startling and jarring, and no sooner would they settle down from one emotional conversation with someone, than someone else would call them, and they’d launch into their hysterics all over again.

Oh. My. God.

I am so tired. I went to bed when I got home last night — about 6 p.m. And I slept till 4:30 this morning. It felt great to get 10-1/2 hours of sleep, and I have a massage later today, which will be fantastic. I also need to drive back out to the tow yard, halfway across the state, to pick up the rest of the equipment in the trashed vehicle, so it’s not a total loss. I just need to work today, to move and go about my business, work around the house, call the insurance company, and take action, without constant processing going on.

Please. I need a break.

Now, I know that I do a lot of talking, myself. And I have to consider my own approach to talking things through and processing everything. I like to think that I process and move on. That I speak my peace and then make necessary changes to ensure those things don’t happen out of my negligence or stupidity or lack of preparation. It’s one thing to go through difficult times. It’s another, to never shut up about it, and “get stuck” in the whole experience, because you want others to feel sorry for you.

If I ever sound like the friend who kept replaying that experience… somebody tell me to shut the hell up. I am truly sorry, if I ever put any of you through that.

Truly, I am.

The crux of it for me, really, is that when we experience trauma, our bodies are put into shock, and on a physical level, we get primed for startle and hyper-alertness. Our bodies are trying to protect us, and they think they have to keep being alert. But they don’t. Our minds pick up on our body’s hyper-alert state, and they get tricked into thinking that they need to be hyper-alert, too… rehashing the experience, so they can “learn” what the situation looked like, to avoid it in the future.

The thing is, for some situations — like a punk in a fast car being an asshole — you cannot predict and anticipate it, so all the “learning” you are doing is just sucking up your energy that could be spent on healing from the whole hellish experience. And rather than making you safer, you’re re-traumatizing yourself and making everything that much worse.

That’s my argument with people who insist on telling everyone about their awful childhood experiences with abusive parents/uncles/siblings/caretakers, etc. It doesn’t change anything, it doesn’t solve anything, it just keeps spreading the trauma around to everyone who had nothing to do with it, and who don’t deserve to be sucked into what was a truly horrific experience.

Trauma needs to be handled in other ways, not talking. It’s a physiological experience, and it needs to be dealt with on the physical level. The body takes over the mind — hijacks your executive functioning — and you have to get it all to settle down, before things in your mind can calm down.

That means resting and eating right and moving. You cannot heal without some sort of movement. You just can’t. You’ve got to get out of your head and get your ass up out of the chair/bed, and really move it. Because if you don’t, your body is going have a backlog of stress chemicals that convince it that it needs to be on HIGH ALERT, and you will keep reliving your shitty experience as though it were still true.

Okay, enough of my rant. It’s time for me to do something constructive with this energy. Time to move.

Time to go juggle. And get on with my day.

Onward.

 

So much for my weekend off

Where’s my damn’ car?

Well, it was a nice thought. I had three days to work on my projects and pretty much unwind, catch up with myself, and sleep… get healthy, etc.

That was the plan, anyway.

Then my spouse got into a really bad car accident on Saturday afternoon, and I had to drive out to a country hospital to meet them and the business associate they were traveling with. The hospital was really old-fashioned – like something out of the 1950s, and the ER physician was about as dynamic as a brick. I’m not sure that he did a thorough job checking out my spouse, who hit their head on the door frame. They said they just had a bump on their head, and they didn’t have a headache. My spouse kept trying to charm the doctor, while he was doing the examination, which can’t have made his job any easier. I didn’t know what to do, other than keep them from lying to the doctor outright. They’re terrified of doctors, and they were completely freaked out by the whole experience. So, there was only so much I could actually do.

My spouse and their friend had their doubts about driving — road conditions were not good, and visibility was poor. But they had committed to the trip, and their destination had good weather, so they thought it would be fine, once they got out there. None of us factored in the weather between our home and their destination. Ultimately, thought,the real problem was no so much the road conditions — rather, the poor judgment and behavior of the person who caused the wreck.

They were not hurt badly, but they had to go to the hospital to be evaluated, and then because of their states of mind and body, they couldn’t get back in a car and drive home. So, we spent Sunday hanging out at a chilly little country motel, wrapped in coats and blankets, trying to stay warm, eating Sunday brunch, finding the tow yard where the car was, collecting their personal items, trying to fit them all into my little hatchback (with three people in it), and getting everyone home safely … from quite a ways away.

They are both truly lucky to be as healthy as they are. They’re lucky to be alive. They both could have easily been killed, if they’d been in a smaller car, or there had been more traffic on the road they were on. For that I am truly grateful. There are a lot of things to be thankful for in this. The car may be totaled, but I kind of hated that car, anyway. It was too big for my spouse — or just about anyone — to handle safely. Especially in low visibility. Or where the space is tight. They felt safe in it, but that’s a grand illusion.

I have no idea where or how we’re going to replace the vehicle, but I’ll figure something out. I just got some money from an estate settlement from a relative who died within the past year, and I was going to use that money to fix the house. But it looks like it may go to either fixing this car or buying a new (to me) one.

My insurance company already hates me, because I’ve filed claims for damage to the house that was actually my fault, rather than an accident. I didn’t realize you can’t file a claim if it’s your fault, or if you didn’t call a repair person to look at it before. I thought you could file your claim and then have the repair person come. I guess it’s the other way around. And now I look like an insurance fraudster. Nice.

But this accident was not my spouse’s fault, and it’s a legitimate claim. Basically, a young kid driving a fast car got “adventurous” on a very narrow road and caused 13 cars to pile up. 7 of them had to be towed (including ours), and a whole bunch of people went to the hospital, including my spouse and their friend/business associate.

And I spent Saturday evening and all day Sunday dealing with the fallout.

I know I’m rambling here. I’m tired and still out of sorts. It’s going to be a few weeks, till this settles down, I’m sure. I just have to keep on — steady on — and take care of myself. Keep balanced. Just deal with it.

Well, anyway, it’s time to take a break. This whole thing has got me thinking a lot about trauma and how to deal with it. I’ve already written a whole long rant about it — I’m going to split it into another section and publish it later. For now, I’m going to focus on being grateful that things didn’t turn out worse.

Because they really could have.

Good gone bad in a hurry

Bummer… and things were going so well

So, last night I was fixing supper, and I messed something up. My spouse was in the kitchen with me, and they started saying things that sounded critical to me, like they can do better than me. I got really agitated and frustrated, and I had a bit of a blow-up at them. I was really angry over them finding fault with what I was doing and comparing their own performance to mine. It was a double put-down. 1) I screwed up, 2) they can do so much better than me.

It really pissed me off, and I got so angry, and then they went into their usual behavioral “repertoire” of acting like I was a bad person for getting angry and yelling — like I was threatening them and being abusive. Oh Lord, oh Lord, oh Lord… I was upset and trying to express myself, and all they could do was make me look like I was the one at fault, and my anger was a threat to them.

I got pretty angry — not over the top, throwing-things angry, but so frustrated and agitated that I almost couldn’t see. And then POP, something in my head felt like it snapped, and I had this sensation of my brain locking up and slowing down to a crawl. It was like someone cracked open a smelling salts capsule — but it had the exact opposite effect. I instantly felt dull and numb, with my face numb and tingling, and my hands tingling. I could physically feel it in my head. I turned into an instant idiot — it was hard for me to understand what was being said, and I couldn’t put words together. My head felt like it had filled up with cotton, and I was suddenly so dull.

I didn’t think it was a stroke, because I haven’t been impaired on one side of my body or the other — and I stuck out my tongue to see if it bent from one side or the other, and it didn’t.

Then again, according to the National Stroke Association, here are the signs of stroke:

Stroke symptoms include:
  • SUDDEN numbness or weakness of face, arm or leg – especially on one side of the body.
  • SUDDEN confusion, trouble speaking or understanding.
  • SUDDEN trouble seeing in one or both eyes.
  • SUDDEN trouble walking, dizziness, loss of balance or coordination.
  • SUDDEN severe headache with no known cause.

So, maybe it was one. I don’t know. One side of my body wasn’t weaker than the other, which is what I usually associate with stroke. I have a meeting with my neuropsych this afternoon, so I’ll check with them. I’m hesitant, because I don’t want trouble from all this. Plus, it has happened to me before — about 3 weeks ago after a meeting when I got really upset with the behavior of some of the folks in the meeting. It was very similar to that time — I felt something “pop” in my head, and I turned into an instant idiot — couldn’t put words together, had trouble speaking, felt slow, and had a low-grade headache.

This time I didn’t get nearly as angry. But the feeling was the same, and now I’m dense and dull and I’m having trouble putting words together. Three weeks ago, it passed. And it didn’t seem like a big enough deal to investigate. It was not much worse than other “episodes” I’ve had in the past, and when I tried to investigate them before, nobody seemed to think they were that big of a deal, and I felt like an idiot for even bringing them up.

I know I’m supposed to go to the ER as soon as I suspect I’m having a stroke, but how would that work, exactly? I can’t miss work, because then I don’t get paid. And my mortgage won’t wait. I’m the only one who’s supporting my household, and if I’m out of work, we’re all pretty much screwed.

I started to get a headache after a while, last night, and I took some Advil, but it didn’t really help. I still have that headache in the front and top of my head, and also towards the back where I hit my head on Saturday.

Seizure? Stroke? Whatever. I’m sounding a little nonchalant about this, I guess, but my feeling is that this kind of stuff has happened with me so often over the years, it’s just one more thing. And even if I did have a stroke, I know how to fix my brain, and manage my issues, so I’m not all that worried. Hell, even if I do become really hampered by my brain, I know how to live my life in a way that brings me happiness and joy. I know how to bounce back and keep going, so I’ll just keep doing what I’ve been doing.

I am reminded of a number of things I need to do is stay vigilant about:

  1. Remember that my spouse is actually mentally ill. Their panic/anxiety disorder has wreaked havoc, and it is a genuine mental illness. They seem to believe that their anxiety is keeping them “safe” from whatever dangers may be out there, and the “help” they are getting from friends and their therapist seems to only reinforce their fears and their devotion to their “precautions”. They are so absolutely imprisoned by their fear about every conceivable thing on the planet, that anyone around them has to abide by their brittle rules or bear the brunt of their wrath. They feel safe when everything is going their way, but it’s absolutely smothering and restrictive for anyone who does not share their view.
  2. Underlying all this anxiety is a handful of neurological issues which are screwing with their thought process. It’s not something I can take personally, when they go off on me. I love and adore my spouse and would love to spend more time with them. Still, it’s really hard to be around them. The other thing that makes it all hard, is that I’m just about the only one who can spend any extended time around them — they’ve chased off just about everyone else with their anxious control. And they don’t understand why that is. Explaining won’t make any difference, because to them, their fears all make perfect sense — and it’s neurological. So there’s only so much explaining I can do.
  3. I need to take care of myself and get what I need for myself to stay strong. I was tired, last night, and I pushed myself too hard. I need to back off and take some time to myself, especially when I spend extended periods with my spouse. My spouse and I had gone for a drive earlier, yesterday before my outburst, and they are so anxiety-ridden about just about everything, that it’s very stressful to be around them. It’s like a never-ending drama — over huge dangers and threats which seem like they’re nothing to me. When I do the driving, they constantly boss me and yell at me about how I drive, where I should turn, what I should do. It’s a total friggin’ drain.
  4. I need to keep to a regularly active schedule. I was out of sorts already, last night before my outburst, because I was off my regular schedule. I also did not expend enough energy over the weekend and wear myself out physically. I need that. I need to keep active and tire myself out, so I don’t think too damn’ much.
  5. My spouses’ way of living is not healthy — for them or for anyone. They spend a lot of time sitting around thinking about shit that makes them crazy, and they end up pulling me into their undertow. When I am around them, they use me as a “sounding board” which just sucks me into their downward spiral. This is not good. I need to keep myself up and elevated and healthy and take regular breaks when I spend a lot of time around them.

Truthfully, I actually need to protect myself from the one person I love with all my heart. It’s kind of tough, but there it is. If I can think of it as protecting myself from the demons that are eating them alive, that’s a better way to look at it. But it’s still very painful to watch them on that downward spiral, and be helpless to do anything about it.

Having extra days off can be good, but they can be be bad, too.

I just have to keep all this in mind and take the best care of myself that I can.

My head hurts. I’m foggy and dull… and a little bit afraid of bringing up the episode last night with my neuropsych. I’m afraid of what might happen if they tell me to go to the hospital and get checked out. But at the same time, if I don’t get the help I need, then what?

On the bright side, I’ve got almost four months’ worth of pay stashed in the bank, so if I do have to take some time off, I can. My mortgage is taken care of for the next month, and I’ve got enough to at least keep going, if I need to take some time.

Ideally, it won’t come to that. But when I think it through, the fact is, I can afford to take a week (even a month) off work, if I have to. I could even go to part-time for the short term, and we’d be okay for at least three or four months.

Anyway, speaking of work, I’ve got to get going. My fingers aren’t typing very well, and I’m fortunate to work with folks who have never seen me at my peak, so they have no idea just how impaired I am, right now. I’ll just get through the day, talk to my neuropsych, and try to keep as clear as possible, so I can make the right decisions and do the right things.

Main thing is to keep chilled out and cool. I’m really bummed out that I couldn’t even make it through a weekend with my spouse without yelling and getting upset. We were doing so well… that is, I was doing so well. They were doing really shitty. But all I can control is myself. So, I have to take care of what I can control — myself — as much as humanly possible.

Screw it. Onward.

Helping our troops during the holidays

Our troops helped us, now let’s help them

The food has been eaten, everyone has returned home, and the weekend awaits. For those who thrive on social activity, being alone after being with so many loved ones can be difficult.

Looking for a way to get out of your post-Thanksgiving funk?

Send a card to a service member. The Red Cross is having a Holiday Mail for Heroes campaign – get details at http://www.redcross.org/support/get-involved/holiday-mail-for-heroes – for folks to write cards to service members to wish them all the best for the holidays.

Each year the American Red Cross provides assistance to more than 2 million service members and many of our nation’s 24 million veterans. We support military families, military and veterans hospitals and provide emergency communications across the globe. And once a year, we get the joy of delivering holiday greetings to veterans, military families and active-duty service members at hospitals and installations around the world.

The cards and personal messages, sent by tens of thousands of Americans, provide a welcome “touch of home” for our troops during the holiday season.

Send a Card

Each year we collect cards between October and early December and then distribute them at military installations, veterans hospitals, and in other locations.

There are several ways to be part of the Holiday Mail for Heroes program. In addition to sending cards on your own, you may want to start making plans to host card signing parties or card making parties. Here are a few guidelines to help you on your way:

Card Guidelines:

Every card received will be screened for hazardous materials and then reviewed by Red Cross volunteers working around the country.

Please observe the following guidelines to ensure a quick reviewing process:

  • Ensure that all cards are signed.
  • Use generic salutations such as “Dear Service Member.” Cards addressed to specific individuals can not be delivered through this program.
  • Only cards are being accepted. Do not send or include letters.
  • Do not include email or home addresses on the cards: the program is not meant to foster pen pal relationships.
  • Do not include inserts of any kind, including photos: these items will be removed during the reviewing process.
  • Please refrain from choosing cards with glitter or using loose glitter as it can aggravate health issues of ill and injured warriors.
  • If you are mailing a large quantity of cards, please bundle them and place them in large mailing envelopes or flat rate postal shipping boxes. Each card does not need its own envelope, as envelopes will be removed from all cards before distribution.

All holiday greetings should be addressed and sent to:

Holiday Mail for Heroes
P.O. Box 5456
Capitol Heights, MD 20791-5456

The deadline for having cards to the P.O. Box is December 6th.
Holiday cards received after this date cannot be guaranteed delivery.

I’ve dug up a big box of old Christmas cards that, for one reason or another, I could not use in the past. Some of the messages don’t work for my family and friends, and some of them are extras I couldn’t use. I’m going to start writing out cards this weekend, while I have some extra time. And then I’ll send them all out in a big batch next week.

It’s a start. I can also pick up those big batches of cards that are mixed collections, and send them along as well. I’ve got almost 80 cards I can use right now — I have to pace myself, because my hand cramps up, but I should be able to make good progress by December 6th.

This is a great way for me to get out of my head and think of others during what can be a very difficult time — especially if you’re laid up in the hospital and you’ve had your career cut short by a terrible event.

Being cut off from the ones you care about most — your family, your brothers/sisters in arms, your “tribe” of choice — can feel like the hardest thing in the world during the holidays.

So, reach out and send a card to someone who needs your help and encouragement. Heaven knows, there are many, many folks like that out there.

Okay, enough about me. It’s time to write some cards.

“how to fool a neuropsych exam”

To whomever found this blog by Googling “how to fool a neuropsych exam” yesterday:

Dude, you’re wrecking things for the rest of us. Cheating on a neuropsych exam (NPA) is no laughing matter, and given how difficult it can be to get real help — especially for those of us with legitimate issues of us who really need help — your cheating is helping the system to trash countless lives.

So, knock it off.

I have been wondering who searched on this term, and what the context was. Could be, it was a student athlete who needs to take an NPA, and they know they’ve been hurt but they still want to keep playing, even though doing so could cost them their health (even their life, thanks to second impact syndrome). That’s very unfortunate, and I wish to God I — or anyone — could talk some sense into that individual.

Or it could be someone who is trying to “game” the system and get some sort of disability compensation. That just pisses me off.

Or it could be someone who genuinely needs help, and their neuropsych is being a dick, so they feel they have to cheat – just to level the playing field.

In all cases, none of the scenarios are good – and they all have their own little tragedies wrapped up inside, just waiting to unfold.

I have a lot of issues with how things are set up for those who need help after TBI. Hospital staff often don’t know nearly enough to be truly helpful, rehab facilities have varied levels of quality, insurance companies are notoriously stingy, and general knowledge in the population is sorely lacking.

Our current “system” for addressing concussion/TBI is a partial solution, no matter how you look at it. The real problem is, people seem to think they are going to get all the help they need from the systems that are in place.

It’s not going to happen. These are all systems, and they cannot possibly meet all the needs of individuals who turn to them. The system is a collection of frameworks and procedures and approaches put in place based on knowledge from years ago, vetted by intensely risk-averse authorities, and implemented by underpaid people who often have huge gaps in their knowledge as well as a ton of compassion fatigue. They’re set up to deal with acute situations to keep you from dying and address the most basic initial problems, but long-term, they run out of benefits pretty quick.

So, if you’re looking to the system to help you with your most pressing TBI needs, I fear you’re going to be sorely disappointed. Maybe not in the first few days or weeks, but over the long term, the TBI/concussion recovery systems we have in place are woefully lacking. And the people behind those systems have a variety of motivations — money, power, influence, being a VIP, making a name for yourself, etc. Every now and then you’ll come across someone who genuinely wants to do the right thing for the right reason, but human nature being what it is…

Anyway, I can understand someone’s desire to “game” the system and cheat on a neuropsych exam. Sometimes it seems like the only way to get what you truly need. I know when I was first starting to look for help with my own TBI issues, my insurance would not cover me for the help I needed, unless I went to a neurologist and got an assessment. But finding a neurologist who would talk to me about TBI — who was in my network — was next to impossible. And then finding someone who could tell that I was having neurological issues, rather than mental health ones… that was a source of pain and hardship for me, for a couple of years before I finally got focused 100% on dealing with TBI.

The first neurologist I saw was a “TBI expert”, but they were in charge of the TBI group at a big mental health hospital (one of the best in the nation). Before long, I found the discussion moving towards mental illness issues, rather than TBI issues. Dude, I’m not here to talk about my relationships with my parents. I got clunked on the head a bunch of times, and my life is falling apart. Now.

The second neurologist I saw was a specialist in Multiple Sclerosis, which is in another ballpark entirely, but they were in my network and I had dealt with them before with regard to a family member’s neuro issues. I thought they might be sympathetic enough to my situation to at least listen to my issues, and my PCP willingly signed off on them. Unfortunately, I was in a pretty diminished state when I went to see them, they were suspicious of me because I’d gone to see the other neuro first, and the whole experience felt more like a colonoscopy than a consult. Dude, I’m not here to get drugs. I just need some answers with regard to TBI.

Yeah, it was pretty bad.

The thing is, I was forced into that situation because A) my insurance required that I see a neurologist before going to see a neuropsych, and B) my coverage also required that I stay “in network” and there weren’t any TBI-savvy neurologists in that network.

So, I was stuck. I did the best I could, but it wasn’t very good. And until I pitched a holy fit with my PCP’s office and demanded that they just sign off on the damned request to go out of network, and I found a neuropsych who actually knew how to fill out the forms, I was stuck dealing with these hostile individuals.

Who were probably hostile because so many other people try to cheat the system.

When you try to cheat the system, you just ruin it for everyone else. The thing of it is, the system lends itself to that, because sometimes it seems like it’s the only way to get what you need out of it. I sometimes wonder if it could ever work even if we all told the truth all the time. I’m not advocating cheating. I’m just saying…

Again, we come back to the underlying issue — that the people who are most in need of help, are required to step up and advocate for themselves and manage the whole neurological kit-n-kaboodle, exactly when they’re least likely to do that well. It’s like asking someone who’s broken their leg to run after a speeding ambulance in order to get treatment. You would never ask someone who’s broken all the fingers in both hands to sign a piece of paper with their precise signature, would you? Nor would you ask someone who’s blindfolded to direct a physician who’s removing a piece of shrapnel from their neck.

So, why are TBI survivors and folks who have been through concussion required to advocate for themselves and independently herd all the “cats” involved in getting adequate care?

It makes no sense.

Small wonder, people feel like they need to pull a fast one on the system, just to get their basic needs met. All the rules, the labyrinth of requirements, the criteria, the qualifications… who can make sense of it? Especially someone with TBI.

Of course, there are genuinely bad-hearted people out there who are trying to pull a fast one to get over on the system. But I’d bet good money that 9 times out of 10, the person who’s “cheating” is just trying to get their most basic needs met, and they neither understand the complexities of the system, nor are they equipped to deal with the ongoing intricacies. With TBI, you can think that you’re telling the truth and providing all the right information, but confabulation has you sounding like a bald-faced liar.

Not good.

On the other hand, once you get past all the system stuff and learn how to handle things for yourself, a whole new world of possibility opens up for you. And then true recovery can begin.

But first you gotta get there.

Speaking of getting there, the day is waiting. Onward.

TBI Recovery Video of the Day

Cody was snowboarding February 2006, ran into a tree, had a traumatic brain injury, was in a coma for 2 months and went back to college 3 months after he got out of the hospital on May 6. Yeah, wow. This video was made by his dad, Dr. Veteto.

http://www.youtube.com/watch?v=ob-AguFXff0

How to ask for medical help

It’s only taken me 20 years, but I’ve finally figured out how to ask for help from medical folks in a way that not only lets me sound halfway intelligent, but also helps them to help me.

I had a very positive and productive interaction with an individual at a hospital the other day. I had undergone some testing a few months back that came up with inconclusive results that didn’t help explain some weirdness I’ve been experiencing most of my life. So, I need to get some more testing, but I’m not sure if my insurance will cover it. So, I had to contact this hospital to find out what billing codes they use and then call back the insurance company with the info. I didn’t have high hopes of getting very far — most of my interactions with hospitals have been tremendously frustrating for me.

But this time was different. There was no fussing. There was no confused back-and-forth. There were only questions and answers — the right questions, too — and positive results. It was so positive and productive, it left me a little speechless. This is a new experience for me — usually, I flounder and flail and can’t figure out what to say to medical folks, and then they get mad at me for not making their jobs harder. But the other day, I managed to conduct a level-headed, objective, intelligent, mature interaction with someone who actually helped me.

The things I did were so basic, so simple, I feel a little stupid talking about them. But not everyone knows how to do this — including me, for the past 20 years. Here’s what I did:

  1. I identified myself with my name
  2. I identified who my doctor is
  3. I gave a brief overview my background — I had some tests, and I need to have more.
  4. I identified the issue to solve — I have to figure out if my insurance will cover these tests.
  5. I identified where I was having trouble solving this issue — my insurance company needs certain billing codes for this test
  6. I identified what I needed to solve my problem — could they tell me what the billing codes were?
  7. If they could help me, what were those codes?
  8. If not, did they know who could tell them — and yes, I would hold.
  9. I got the details from them and wrote them down
  10. I repeated the details back to them for confirmation
  11. I got their name and their telephone number
  12. I repeated once more what they had told me and identified my next steps
  13. I thanked them for their help and wished them a good day.

It sounds so simple… but until the other day, I had rarely managed to conduct any kind of conversation in this systematic a manner, and it always went poorly. I got turned around and angry, and the people I was talking to always got a bit beaten up in the process.

But the other day, that didn’t happen.

Now I know how to do this.

Magic.