Getting new doctors

The tremors in my right thumb and hand have been getting more noticeable, lately. The numbness and tingling on the left side of my face has continued,and it’s now just a part of my day-to-day.

And the neuro I was referred to, has not managed to get their insurance situation sorted out. I have been waiting for three months for them to get their act together, and still it hasn’t happened.

Do I feel comfortable turning over my neurological healthcare to someone who is resigned to let red tape block them from practicing?

No.

What will happen if I am in real need of specific types of care, and they cannot get their act together to provide the help I need? What then?

So, I need to find a neuro who can check me out for this tremor business.

And I also need to find a new PCP. The one I’ve been seeing has been good for getting me basically squared away, but they have been really lax with some things and have not followed up with as much engagement as I would like.

It’s not like I’m sick a lot, but when things do go wrong, I need to know I can count on someone to be all there — 100%. It’s my health and well-being. I don’t think it’s too much to ask.

But first things first. It’s pretty overwhelming for me to find a neuro, and the anxiety around getting a new PCP is pretty intense for me. So, one thing at a time.

When I do start talking to doctors, I’m going to take a piece of paper to them that tells them what my goals for care are,and how I need them to help me get there. I have no guarantee that they’re going to ask that, themselves, but that doesn’t need to keep me from discussing my intentions with them.

And keeping it simple and straightforward is the way to go. Even if it completely oversimplifies everything. First I need to get an “in” with them. Don’t overwhelm them before they have a chance to get to know me. When I deluge them with all my concerns, I come across sounding like a bit of a hypochondriac, because who the hell could walk around feeling like I do, being as functional as I am with so many issues?

Or maybe the issues are all in my head, and I’m malingering… looking for attention.  Whining and bitching and being a little cry-baby.

Whatever.

Actually, all I really want from a doctor at this point is some diagnostics to make sure the tremor and numbness in my face isn’t something bigger and badder than it seems to be. I just don’t like getting “caught out”. I want to get a head start, if at all possible, and get ahead of my issues before they get the best of me. I’ve lost too much time to “wait and see” approaches.

Time to get moving. Tomorrow I start calling around again.

Onward.

“What are your goals for care, and how can I help you to get there?”

The road to recovery … long, winding, not always with an end in sight

This is the question just about every patient wishes their doctor or other healthcare provider(s) would ask them.

But they rarely – if ever – do.

I’ve never been asked this question myself, and I wish to high heaven I had been.

It would have gotten me thinking. And that would have been a good thing. Because it would have gotten me thinking about the right thing(s), from the get-go.

What did I want from care, and how did I want my healthcare provider(s) to help me get there?

I rarely, if ever, thought in such specific terms — partly because I didn’t have much past success with A) identifying goals, and B) achieving them. Outcomes were something general, something approximate, that amounted basically to “I just want to feel better,” without ever fully realizing what “better” meant, or how it would really feel to be that way. Expecially with TBI, everything was such a blur, such a source of confusion. But if you asked me a specific question and gave me something focused to react to… then I had a fighting chance.

More than 10 years after my last TBI, I can hardly believe what a difference an active recovery has made. It’s like night and day, compared to how I was before. Yes, I still have my issues, but now I know how to handle them, and they’re not as much of a killer as they were before.

There have been specific things that have helped me:

  1. Actually realizing that I was struggling with issues related to mild TBI.
  2. Learning about the details of those issues and understanding how they affected me each day.
  3. Actively working, each day, to come to terms with them, work through them, and learn to live better, a little bit at a time. Keeping notes. Or not keeping notes. Tracking the results of things I try, and trying again when things get screwed up.
  4. Having someone to talk to regularly about my life, focusing on my progress and positive experiences. Just practicing talking to someone on a regular basis — someone who is not in my immediate social circle, who is interested in the same sorts of things that I am — philosophy, quantum physics, human performance — that has been hugely helpful for me.
  5. Blogging about the things I have a hard time discussing out loud.

I’ve been looking back and past posts I’ve done, and it’s pretty amazing how much things have improved with me over the past seven years. I started blogging in earnest in 2008, and reading what I wrote then sounds like reading what a child wrote, years ago.

I guess I was a case of arrested development, back then. Really cut off from the world, by choice as well as by default. Overwhelmed. Unsure. On the defensive about, well, everything. On my own, in more ways than one.

Anyway, I seem to have veered away from my original topic — what healthcare providers could/should ask us about what we want and how they can help. I guess my point is really that through it all, I’ve had to help myself. And that hasn’t been all bad. I’m not sure my neuropsych or doctors have had a clue what was really going on with me in my experience. Whatever. I knew. And I dealt with it, when they couldn’t (or wouldn’t).

In any case, I’m a whole lot better now. Getting back to myself. Getting back my Sense Of Self. Slow going, but at least it’s going… Whether or not anyone is offering to help me in a professional capacity.

ON-ward.

[WEB SITE] Brain Training And The End Of The Prozac Generation

brokenbrilliant:

The way we interact with our brains may be very different in the future than it is today.

Originally posted on TBI Rehabilitation:

More than 20 percent of Americans regularly consume prescribed drugs related to mental health issues, earning contemporary America the nickname, “the Prozac Generation.”  However, developing safe, targeted, and effective drugs for mental illnesses has increasingly become a struggle for the pharmaceutical industry.

As a result, there’s been a gradual withdrawal of research dollars from this area, despite the fact that globally, the mental health pharmaceutical market is worth more than $80 billion.

According to the National Institute for Mental Health (NIMH), more than 57 million people, or 26 percent of the U.S. population suffer from some form of mental health problem. But despite the ongoing need, one can legitimately claim that research has not produced a novel neurological drug in the past 30 years.  Additionally, many drugs currently on the market have been increasingly identified with negative side effects and limited efficacy.

Until recently, most mood disorders were attributed to an…

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Live more, labor less, work better

OK, birds are good

A funny thing has happened, since I switched over to a standing desk at home and at work. All of a sudden, I’m thinking a whole lot better. AND I don’t get caught up in perseverating quite the way I used to. I’m not getting stuck in a particular train of thought… unable to change my direction.

I’m also feeling less rigid, less stuck. And I’m letting go of stuff that I used to cling to so intently, just because…

Old projects that used to seem so important… new ideas to work on. Inventions. Websites. Passive income. MAKING IT HAPPEN. All those ideas in my head, all of them competing for space and time. When all I really wanted to do, was focus on one or two of them, and let the rest go. I couldn’t seem to let things go when they no longer mattered deeply to me.

Habit, maybe? I dunno. I was just stuck.  Stuck in the hustle. Stuck in the constant campaign for productivity and effectiveness. How tiresome it all got.

Oddly, I don’t have that old hunger to pile up all sorts of projects on myself, anymore. It’s like, with this last round of layoffs and all the drama at work, the absolute futility of getting attached to any particular outcome is pointless and vain, so why not just focus on doing what you do, for the love of doing it,rather than achieving any specific desired effect from it. Just getting into the doing for the sake of doing, and letting everything else just sort itself out.

Now I am more focused on just doing things because I enjoy them and they bring me some sense of fulfillment. In addition to hitting that old futility wall at work, I also think it has to do with the energy I am getting from standing. It really keeps me on my toes, literally and figuratively, and just moving around is doing wonders for my pain and stiffness.

Pretty amazing, really.

I think that I used to hang onto all those old projects I had going, in part because the stress of overload kept me alert. The adrenaline and excitement were palpable, they fed me. No more. All that whoop-de-do doesn’t feed me, it drains me. Now I’m keeping alert by standing up, and I don’t actually need the environmental stress to keep me sharp.

It’s all about the energy.

And it’s good energy, too. I find myself having to work less hard, to make progress in the one or two things I have going on, these days. I can actually think on the fly, instead of needing to sit down at my desk.  I’ve had some good breakthroughs, lately. They just come.

And they come, because I’ve stopped funnelling so much time and energy and attention towards things that don’t actually matter to me, anymore. There was a lot that I was really doing for the money… pushing and pushing to “realize the potential” of ideas. Please. I’ve managed to let that go (for now, anyway), and I’ve stopped working so hard at absolutely everything. I’m just doing my thing. No pressure.

Whatever. {shrug}

It’s a lot more fun, this way.

And I could really use more fun.

Onward…

Just enjoying it

I’m pretty tired, this week. I’ve been all up in my head, because of all the drama at work, with people being moved around and worrying about where they’re going to land.

And I lost sight of a few things:

  1. A lot of the people I work with are at the office each day by default. They are not entrepreneurial in nature, and they go to work (in part) to avoid having to figure out their life’s course. They have their permanent full-time jobs because they want someone else to make decisions for them and tell them what to do.
  2. Expecting someone else to make the right decisions for you is a losing battle. Chances are, you and your needs are not even on their radar.
  3. I am not the sort of person who wants anyone else to tell me what to do.
  4. I am the sort of person who figures it out for myself, by myself.
  5. Much that has everyone else worried, concerned, and worked up, has nothing to do with me.
  6. And most importantly – I’m being influenced by fears and insecurities that I do not share – nor ever want to.

In a way, seeing all this drama going on around me is a good reminder of where I truly want to be in the world.

I guess I’ll go to work now…

 

I am just so tired of all this crap

That’s one approach

Maybe I’m getting old, but all the hullabaloo at work over everything that needs to get done… it’s really getting tiresome.

Lots of work, not enough people to do it. And the people who understand how it’s done are leaving the company, so that leaves it to the rest of us to figure it out. And it leaves it to me to explain.

My mood is low today, because I’m tired. I have a lot going on, this week, and I feel like I’m not keeping up. And the same thing next week. And the week after. And the week after… until July. At every step along the way, there are critical details to keep track of, and to be honest, I’m not keeping up with everything.

I’m not the only one, either. Everybody is being asked to “do more with less”, which gets really old, after a while.

Anyway, things will change in time. Either I’ll get used to them, or they will get better. That’s how it goes with me. Time solves a lot of problems, just by being Time.

And I have to keep in mind that in another six months, this is going to be a past blip on my radar. All the pain and suffering I’m experiencing right now will be behind me. Maybe new pain and suffering will take its place… Yeah, I’m not thinking about that, right now. I’d rather think about my next steps — get my head out of the particular details of my situation and work on my resume, for the next thing to come, a year from now.

Someone asked me yesterday if I would ever sign on with this company full-time. Not for the money they pay and 2 paltry weeks of vacation they offer. I could go back to my old employer and have four weeks, right off the bat. Or I can continue to contract, make1/3 more money than I make as salaried employee, and be free to come and go as I please. That would be preferable.

The money needs to be there. And the time off. I’m not settling for less. There are too many other options out there, and now that my insurance situation has changed (my spouse is on separate insurance which gives them more comprehensive coverage at a fraction of what we were paying before), I don’t have to take — and keep — crappy jobs because of the insurance.

But the day is waiting. Time to wade back into the thick of it.

And think about my future. Because I don’t have to stay stuck in this crap forever.

Onward.

Not for the faint of heart

The path must be there somewhere

The path must be there somewhere

I’ve been thinking a lot about my recovery, lately. What I lost to TBI, what I’ve gotten back, and where I go from here.

Scratch that. Yes, I’ve been thinking a lot about it, but thinking is not the point.

Living is.

Looking back at where I was, just a few years ago, it amazes me that I was as functional as I was. I mean, even just five years ago, I was grappling with all kinds of crap like intense mood swings that would completely wreck my day, and a ton of money troubles — creditors calling me constantly, threatening to take me to court — and some of them succeeding.

I landed in court at least twice (maybe three times?) that I can remember, and I totally screwed up one of the appearances, where I didn’t realize I needed to go into the actual courtroom. Even though I was sitting right outside, they logged me as a did-not-appear, which didn’t do much for my case.

Oh well. That’s over now. Don’t plan to go back there again.

Anyway, everything was so turned around, and it was literally all I could do, to keep up. I was in constant reaction-mode, constantly pushing, constantly fighting, constantly going against a grain of one kind or another. I was off my moorings, cut loose from the life I’d once known, and I was dealing with my spouse’s illness, as well.

All this, while having no real sense of who I was, or what I was about. I was on auto-pilot, just hacking my way through the weeds. And there didn’t seem to be a clear path.

To anywhere.

Now things are different. Very, very different. And I’m coming out of the jungle with a clearer view of where to go. It’s like I can actually see a path in front of me. It’s not ideal, but it’s still a path.

That's more like it

That’s more like it

And I’m still walking. Running, now and then. I’m also making progress, each and every day. I just need to make sure I get enough rest and good food, to keep going. That means real food, not a handful of candy and junk food at 3:00 in the afternoon. That sh*t will do me in.

Anyway, life goes on. I’m putting some distance between my past and present, and that’s giving me some needed perspective. I was so caught up in just getting through, so turned around, so uncertain about how to live my life.

All the things that had seemed so familiar to me — the old ways of thinking and doing and being seemed to be smashed to smithereens. From the simplest of activities like brushing my teeth and coming my hair in the morning, to making breakfast, to what I did for work each day… all of it morphed into something different and unrecognizable.

And it was really hell.

I think the hardest thing was losing my innate skill with little simple things, like being able to hold things without having to think about it. Dropping stuff all the time did a number on my self-confidence, and I couldn’t figure out how to get it all back. I just felt so stupid, so dumb, so inept. The simplest things were challenges for me, and I didn’t understand why they were hard for me.

That just stressed me out, and stress biochemistry does a number on your ability to learn.

More stress meant it took longer for me to re-learn, to re-train my body and brain, and it just prolonged everything. I didn’t understand the nature of my problems. All I could see was that I had those problems — or rather, they had me — and there didn’t seem to be any escaping it.

Now I know better, of course, but it’s been a long, hard road. And frankly, it’s sucked.

It was lonely. It still is lonely. Because nobody seems to understand what it’s like to actually lose your Sense-Of-Self. What it does to you. What it does to the people around you. How much it takes out of you, day in and day out, to have to reconstruct your life. I’ve rebuilt a huge amount of aspects of my life as I once knew it, but to be honest, I still know that I’m not the same person I used to be. And while I’m “close enough”, still…

I don’t feel the same way as I used to — about my life, about living my life, about, well, most things. And that loss of Self, that loss of the Sense of My Self, has been the hardest thing to overcome. I know how to rebuild. I know what it takes. But it’s still not easy, and most days, I’d rather not have to.

There’s a reason people don’t readily jump into finding out what it’s like to recover from a TBI. Or Concussion. Or stroke. Or brain aneurism. Or encephalitis. It scares the bejesus out of them to think that the brain can change as dramatically as that, and they just don’t want to think about it.

Some of us have to do this work. But it’s not for the faint of heart.

Finding my zone again

Gotta get there

An odd thing has happened with me, since I had my contract renewed at work. After being relieved and elated that I wasn’t going to have to go searching high and low for another job, the surge in energy left me feeling pretty depleted… and also depressed.

That happens with me — I run a lot of energy — I “run hot” — and then when I run out of steam, my energy ebbs, and my mind gets to thinking that I feel like crap because my life is crap, and everything is wrong and nothing will every be right again. It’s sorta kinda like bipolar stuff on the surface, but fundamentally, it’s about me being tired, my brain getting irritable, and my head jumping to wrong conclusions about how crappy life is in general.

It’s not true. It’s just me being tired. And getting a lot of extra rest solves that issue — which is what I did this past weekend. I rested. And my depression went away.

Anyway, last week I got upset that I’m no longer a technical whiz, that I’m not doing the type of programming I used to do, and that I kept (and keep) getting calls and emails from recruiters about technical jobs that I want to take, but can no longer do.

The money is better in technical positions, that’s for sure. And it’s a simpler way of life that doesn’t involve navigating the choppy waters of human interaction. But I just can’t do it, anymore. My brain doesn’t work like that anymore. I’m out of practice. And even the simplest examples which are given for “dummies” don’t make any sense to me.

Insert giant sad-face here.

The thing that gets me even more than the money and type of work, is that ever since my fall in 2004, I have not had that kind of immersive focus in my work that I used to have. I used to have a “zone” I would go to, when I was deep in coding, when I was deep in the experience and working smoothly and confidently. But that hasn’t been anywhere in sight (except for some occasional times), for over 10 years.

And that’s the loss I feel the most keenly. It’s heart-breaking. I used to love that way of working and feeling, and now it’s gone. Like a pinkie finger that got cut off. I can live and work without it, but I like all my fingers, and it just doesn’t feel the same.

So, rather than wallowing in that unhappiness and marinating in my discontent with something that isn’t likely to change in exactly the way I want it, I did some research. And I came across a book called “Flow” by a psychologist whose name I cannot pronounce. I watched some videos on YouTube and found the book at a local library, and I’ve been digging into it, a little bit at a time.

See, the thing that I miss is not so much the technical work, as it is the experience I used to have while doing the technical work. And after reading “Flow” a little bit, I now realize that what I miss is being in the “zone” — being able to concentrate completely on my work with total confidence and skill.

That’s what made that work magical, not just all the bits and bytes and algorithms.

So, that’s what I’m working on, these days — getting back to a zone state. Finding where I am really confident and skilled — even in the little things like washing dishes or fixing things around the house — and doing those things “in the zone”. Not zoning out, where I’m not present and I’m ignoring everything and everyone around me, but really being caught up in the amazingness of what I’m doing.

Finding that amazing quality to the world I live in, and really relishing the details — no matter how small.

Even the littlest thing, like brushing my teeth or sweeping the floor, can put me in the zone, if I have the right frame of mind. Or bigger things like doing my taxes or completing a project at work… that can give me a sense of Flow, as well.

It’s really the quality of experience I’m interested in. And out of that can then come a sense of mastery, which in turn feeds the desire for mastery in other areas of my life.

But I have to start somewhere, and then build from there.

So, that’s what I’m doing. I know what I’m missing, and I have a good idea how to restore that “zone” sense, that feeling of flow. It’s probably going to be different, of course, because my new work is different from my old. But maybe it will be quite similar.

We shall see.

To Be Yourself

brokenbrilliant:

More good reading about what TBI does to our sense of Self

Originally posted on Recoveryofthemind.com:

To be Nobody- e.e. cummingsI have always thought that people do not give you the belief of feeling important you give that to yourself. You do not need anyone to validate your importance in the world but we all need it sometimes. We desire our family to love us no matter what, our friends to include us, and our community to embrace us. We never expect that our world will crumble from the inside from something that happens to us on the outside. It happens and for people with traumatic brain injuries it is the beginning of a very long and arduous journey. It is a journey of discovering who we are all over again. In an instant, our sense of who we were is gone. Some of us never regain it again.

To all of us loving who we are is important so that we go out in the world and show the…

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