After concussion – I’m not stupid, you just think I am

This is an extension of the piece I wrote years ago (January, 2011), called “After concussion – you’re not stupid, it just feels that way“. I’m writing this after seeing a physiatrist for a follow-up appointment regarding neck & shoulder pain/stiffness and tingling and weakness in my left hand and arm. They had given me a prescription for a physical therapist to get some help, but I never got PT help, because:

  1. Carving time out of my schedule is a challenge. I already have two standing appointments after work, each week, and a third (and sometimes a fourth) usually shows up, which doesn’t leave me enough time to rest.
  2. The one PT who I am interested in seeing has an office a good hour from my home, which not only makes it tough to find the time, but it also threatens to wipe out any benefits I get from them, while I’m driving home.
  3. It’s hard for me to explain what’s going on with me, because I get turned around – especially when I’m tired, and my symptoms shift and change. It’s hard for me to A) remember from one day to the next how I’ve been feeling, B) track how I’m feeling without it being disruptive, and C) put into words the impact of my issues. Not being able to explain — especially to people who do not know me, and who do not know how to parse out all the information in a meaningful way… it’s just a waste of time.
  4. The PTs I’ve worked with in the past have had no clue (I mean, NO CLUE) what to do with me, when they found out about my head and neck injuries. They either treated me like I was mentally deficient, or they got so in a tizzy about my different injuries and whole host of aches and pains and issues, that they were no use to me at all. They were so obsessed with being careful, that they achieved nothing at all.And what they showed me was stuff I already knew how to do.

So, no, I didn’t follow up with a PT, and I told the doctor a few of the points above. I should have written it down, but I didn’t get to it.

The doc was a little taken aback, probably because I had seemed so compliant and cooperative when we’d met. I explained to them that I hadn’t had good experiences with PTs, and anyway, I thought I’d try to fix the issue myself with some light exercises… which has worked. Strengthening my trapezius muscles in a specific way and also stretching my neck has resolved my issues. That, and being determined to not get hooked into a healthcare system that is A) clueless about me, and B) too impatient to be of much help to me.

In the end, we parted ways with them telling me that I was going to be fine and I guess trying to be encouraging. That’s fine, but it was also a bit infuriating, because (cover your ears and/or close your eyes) Jesus Fucking Christ They Treated Me Like A Goddamned Simple-Minded Idiot. They talked slowly and said “Good job!” a lot, like I was a goddamned puppy learning a new trick. They were complementary towards me for taking things into my own hands and being pro-active, but the way they did it seemed forced, like they were making an extra effort to accommodate my “disability”.

I do not have a disability. I have a history of injuries that have changed the ways I process information, and just because I’m struggling to find the right words — “X-ray”… “arthritis”… “traps” — doesn’t mean I’m not parsing all the information as well as the next person. My brain works differently — not worse. But every time I stopped to find a word or I had to work at putting thoughts into a sentence, they got a little more “accommodating” and remedial with the way they interacted with me. The worst thing was when I started to tear up over explaining why it’s hard for me to get help.When I get angry or frustrated, I tend to cry. And you’re right, if you’re thinking “How inconvenient… How infuriating.”  It is. And that makes me even more prone to tears. Arrrrgggghhhh!!!!! &(*$^%#*!!!!

I’m sure they were trying to be compassionate and empathetic and whatever, but their total affect came across like they had to talk more slowly and put ideas into small words and lower their communication level for the simpleton in the room (that would be me). It seemed like they thought that I was less intelligent and less capable of processing information due to my history of TBI, so they had to talk to me like a 5th grader. Plus, they kept saying that everything that’s happening to me, is just because of my getting older. They said that a lot, last time I saw them. And they kept saying it with this air of “professional resignation”, like that’s just how it is, and I was a mentally deficient person who was getting all paranoid with bad thought habits, thanks to my history of head injury.

The thing is, my 50 years on the planet might be a factor, but my family members regularly live well into their 90s and  past 100, so I’ve got another 50 years ahead of me. At least. It’s medically possible now to live till 120, so we’re probably looking at 150 being possible, by the time I near that. That’s my plan, and all this talk about “well, that’s just what happens when you get old” is not helpful to my plan. It’s just a bit resigned. Pessimistic. Cynical. None of the things that actually help me… or are consistent with my own attitude towards life and living it to its fullest.

Now, if I were going to see this doctor regularly for an extended period of time, I could do something about this. They would get to know me. They would change their mind about what “has” to happen as we grow older. They would realize that they don’t have to give me me special treatment – they just need to have a little patience while my brain coughs up the right word. And I’d be able to educate them about the ways in which I am strong – so strong – instead of just what they see with the verbal issues.

But I’m never going to see them again. I can deal with my issues on my own. I don’t need to be constantly told to adjust my expectations down, thanks to the inevitable march of time. And call me crazy, but adding an hour of driving, breaking up my work day, and spending $40 a pop to go see someone who is just going to talk down to me, no matter how helpful they’re trying to be… seems like a waste of time. It was a great lesson to learn — next time I’m not going to bother going back again, if I’m actually not having any more issues. Consider the lesson learned.

It’s best that I just steer clear.

And while I’ll never have to deal with them again, most likely, this is the thing that makes me NUTS about people and their cognitive prejudices. If you’ve got difficulties putting words together verbally, people assume you’re less intelligent or are “slow”. If you have little tics or fidgets, they think there’s something wrong with you. If you don’t answer them immediately with a definitive reply, they take you for weak-minded and indecisive, and they sometimes get angry to boot. If you get tired and distracted and lose track of what they’re talking about, they think you’re not interested in what they’re saying, and they get angry. If you can’t remember things that happened only a few minutes ago, they think you’ve got Alzheimer’s or some other degenerative condition that’s making you lose your mind, and they start “helping” you remember things.

Doctors are just as susceptible. They are human, after all, and medical education doesn’t always impart insight or interpersonal clue-fulness. Maybe this physiatrist has seen other folks with concussion / TBI, and they needed the extra help. But it’s really demeaning to treat people in that way — like children, or developmentally delayed “dearies” who just need love and understanding – not cold, hard facts.

For as long as I can remember, my parents have treated me like I was “special”. Like my inability to remember things marked me as less-than. Like my losing track of things and getting lost with directions meant I was functionally impaired.

I am not an idiot. I am not simple-minded. I am not intellectually impaired.

I have a handful of issues that get a lot worse when I am tired, in unfamiliar conditions, or under pressure. I have a handful of issues that I have learned to work around. I don’t need anyone’s condescension or “help”. I just need people to cut me a break, be polite, and treat me professionally. I need them to treat me like the adult I am, and with the respect I deserve.

Is that so much to ask?

Well, so much for my new neuro…

Last night I got a letter from my new neuro — you know, the one I had to wait five months to see, because the insurance company wasn’t transferring their credentials from their old hospital, and they didn’t aggressively follow up…

Turns out, due to family obligations, they need to move out of state. They’re leaving at the end of June.

As they say in a crowded waiting room… Next!

I’m not sure how I feel about this whole thing. It’s annoying and disappointing, but it’s also kind of a relief.

On the one hand, I had to wait months to finally get to see them, but I was hoping it was worth it. It seemed like they were someone I could work with. I’ve been wanting to find a decent neuro, and they came highly recommended, so I waited. And I felt like I could work with them.

If I’m going to work with a neurologist, I really need to establish an extended relationship with them, so they can understand me and I can understand them. It’s not easy for me. It takes time. So, having them leave now is a blessing in disguise. At least I didn’t sink a lot of time and energy into that relationship.But the fact that I had to wait five months to see them, is five months of lost time — the whole time I could have spent finding another neuro to work with. And not had them skedaddle.

On the other hand, I’m not sure I want to develop a relationship with a neurologist. That initial visit really took the steam out of me. Covering all the details was draining, and even though I did feel like we got off to an okay start, it’s still kind of thrown me into a tailspin, having to factor in the whole diagnostic adventure. Migraine. Photophobia. Possible dysautonomia. Etc. I’ve got a lot going on with me, and I’m accustomed to managing things myself. So, adding in more input and requirements (especially meds) is pretty disruptive. It means I have to rethink a lot of things about my life. And make some changes that aren’t easy for me to make.

And there’s no guarantee they’re going to actually help me beyond what I can do for myself.

It’s nice to have some Imitrex handy, in case I get one of those crippling migraines again, but to be truthful, I don’t know that I’d even take it. Which is worse? The pain or the side-effects? At least with pain, I can function. Side effects… who knows?

The other thing is, all the doctors I’ve met (including this neuro) seem to have preconceived notions about how people who’ve sustained multiple concussions function and behave. When I tell them my history, they literally look at me like I have two heads, and they talk to me more slowly.

It’s almost like they expect me to be an idiot, or something. I mean, yeah – I do tend to forget things that people tell me in a matter of minutes, if I don’t take extra steps to remember it. But that doesn’t mean I’m an idiot. Nor does it mean I’m less intelligent.

Argh! It makes me crazy when people equate memory with intelligence or the ability to function. I mean, my resistance to short-term interference is close to the very bottom of the scale — that hasn’t changed in 6+ years of rehabilitation. But does that make me less intelligent or less capable of processing information in different ways? Oh, HELL no!

I simply have a different way of processing things, is all.

So effing there.

Anyway, it’s an amazingly beautiful day, and I managed to get an acupuncture appointment this morning — woot woot! It’s been a while, since I last had one, and I’ve been needing it. Coordinating all this healthcare is a huge pain in the ass. Between neurologists and orthopedists and chiropractors and acupuncturists and neuropsychologists and counseling (which is actually more of a check-in for me once a month to see how I’m doing), plus my day-job, meetings with recruiters, plus all the other things I do with myself, my proverbial dance card is FULL. Sigh.

But that’s changing… I can take the neuro out of the mix. I got my MRI and everything looks fine. I had a neck x-ray this past week, and other than a little arthritis, things are good. Overall, I’m in decent shape, and now I’ve done my periodic check-up for certain key areas that have been concerning me. It’s not any particular disorder. It’s just wear and tear from life. So it goes.

Anyway, since it is such a beautiful day, I’m going out for a walk.

Because I can.

Onward.

After a flurry of activity… a bit of calm

Decisions, decisions…

All the excitement of last weekend is finally chilling out.

I’ve talked before about how I’m just not interested in things that used to fascinate me.

I’m actually interested in a whole lot more things. And the weird thing about how my brain works now, is that I’ll completely forget the things that I’m fascinated with, and what I can do to explore them.

I think I need to make a list.

And even more importantly, I need to stick to it.

I have been really, really impulsive for the past month or so. I think the talks with doctors get to me. I went to see a physiatrist yesterday to help me with my neck and back, and possibly with my headaches. They were really good, professional, and they ordered x-rays and referred me to a physical therapist of my choosing.

I have another neuro appointment coming up next week, and I’m a little nervous that I’m not going to handle that right. The last visit was okay, it was just overwhelming talking about my issues with a brand new person. The next time will be better, I’m sure.

I hope.

Anyway… nerves…

When I’m nervous, I have all kinds of “great” ideas that I want to rush into right away. A lot of them are really good, it’s just not the time, yet. And by getting caught up in the new ideas, the existing ideas fall away.

But I’m so caught up in the new ideas, I don’t feel the need to think about them. The old ideas seem boring to me. No spark. No excitement. No motivation.

No good.

That’s what’s happened to me. I had a flurry of activity, this past weekend, and I actually did some decent things. I just didn’t do the things I was intending to do. And that’s no good. I lost a lot of time AND I didn’t exercise the way I usually do, so my system feels more off. And I’m having more headaches.

I seem to be calming down, now, for some reason. I think I just got to a point where I realized ALL THIS STUFF IS NOT GOING TO GET DONE, UNLESS I MAKE SOME CHOICES. I can’t just have it all hanging around. I need to clear some of this stuff out.

So, it’s back to basics. I’m digging out my old list of projects and picking things to work on. I have five things “in rotation” right now, which means I can do one thing each day of the week for the next three months, and get them all done.

And leave my weekends open to just enjoy myself. Unwind. Kick back. Relax, already. Just relax.

Because that’s what I need.

And that’s what makes everything else possible.

Onward. But be smart about it.

When understanding keeps its distance

On the outside, not even looking in

One thing that has been a consistent problem with me for many years, is understanding what people are saying and being able to hold a reasonable conversation that I could then remember later. Yesterday someone found their way to this blog by searching for an answer to why their brain injury makes it hard for them to understand what’s happening on t.v.

I kind of glossed over it — I was tired and I was running out of steam. But now luka wrote something in the comments that really summed up a lot of things I was unable to think of or put into words, yesterday. His words are in bold.

This difficulty in trying to understand what people are saying has been one of the hardest things for me to handle. There came a time I wanted only to be in another culture, so I’d have an excuse for just not “getting it”. Now I’m with my roots and I feel their hidden disdain for my existence. And I’m not running. I’m too tired and too old now. They’re stuck with this smart, retarted man. And I will take to isolation more and more, but I won’t be out sight out mind. But communication at times baffles me much more than one could tell. Well, not sure if it’s denial or pride, but I think for the most part it has been an area that has bewildered me. It’s that it fluctuates some and in my compensation and extreme need to focus and to remember, I can, at times, be more aware than anyone about what is being communicated. The problem is that there is usually a lag time. And in mid flight I’m stuck on details and snippets in the conversation that makes me miss much meaning that gives life meaning to our social species.

I can relate to what he says on so many levels. The lag time when people are talking to me… feeling like I have to constantly scramble to keep up — either working overtime to stay engaged in the conversation, or simply recall what someone said to me a few minutes ago. A lot of the time, it’s gone — for good — and I have to make it up as I go along, but I don’t have the energy to keep track of everything, write it all down, and sort things out in my head. So, as often as not, I just go along and pretend I know what’s happening.

I struggled with this for a long time — feeling stupid, feeling retarded, feeling lame. And I tried to address it with my neuropsych, who has really helped me to figure out how to hold a conversation. Now I can converse with people and be witty and whatnot. The only thing is, I’m still lagging. I still have the processing delay. My most recent test results show that my speed of information processing has NOT improved in the past 8 years. I’m two standard deviations below what would be expected of me, given my overall intelligence.

So, I’m literally not making it up. It’s not something I’ve concocted in my head to feel badly about myself or come up with a reason to get pity. It’s a thing. It’s a real, genuine thing. And the fact that my neuropsych keeps downplaying my irritation with it, just adds to the difficulty.

So, I have effectively learned how to make do in conversations with my neuropsych. I’ve learned how to fake it even better than before. I can hold my own pretty well and conduct a conversation, and I am even comfortable now, saying, “I don’t understand — can you please repeat what you just said?” I never, ever did that before, because I was too busy trying to keep up to stop the conversation to get clear on something that was lost along the way.

It’s not genuine improvement — it’s functional improvement. That means to me, I can function better, I look better to other people, and I have better outcomes from interactions with people. But I’m still in the dark. I’m still struggling. I just don’t show it.

The most painful thing, is that my neuropsych flatly refuses to believe that I still struggle with this. They seem to believe that by telling myself I’m fully functional and can do anything I can put my mind to, I can achieve the world. Or at least a significant part of it. They can be very strange that way, like someone who’s bought into a whole Great American Mythology of Anything Is Possible If You Just Try Hard Enough.

I hate it when people who should know better, fall prey to their own mythology. My neuropsych believes (truly) that you can make yourself into whoever and whatever you want to be, and if your experience isn’t turning out how you’d like it, you just change your definition of what constitutes a good experience, and voila — you’re a success. I’ll spare you my rant on that. It’s just a distraction.

I’ve actually been trying to speed up my processing, I’ve been trying to work on my distractability, I’ve been trying to strengthen those areas where I have demonstrated problems. But years into my rehab, five of the six areas of significant difficulty remain unchanged.

At least, that’s how it was in 2013. I may have actually improved since then.

Anyway, yeah, there’s the whole thing about people seeing your innate intelligence and then not understanding why you’re so stupid at times… that’s all too familiar. The sidelong glances when you say something unexpected… the subtle (and not-so-subtle) hints… the teasing that has a nasty edge to it… I understand why people do that. It’s because it makes them uncomfortable, and it’s not consistent with their image of who you are and how you should be.

People are neurologically and biochemically invested in us being a certain way — it tells them how they should be around us, which stimulates certain neuro and biochemical pathways. How we are, makes others who they are. And when we are “not who they think we are” in predictable ways, it’s an existential threat. So, they feel endangered. And they lash out at us without even knowing it. We frighten them — Simply by being different from what they expect. And they feel the need to defend themselves and their understandings of who they themselves are.

But even if I understand why people are this way, I am so sick of it. I’ve been sick of it for over 40 years. I’m just about to turn 50, and I started having TBIs when I was 7 years old — probably even before that. Heck, I might have had an anoxic brain injury when my mother left me in the care of a neighbor kid who was “special” and put a clothespin on my nose to see what would happen. (I’m swearing in my head, but I won’t write what I’m thinking.) People have been really unkind to me for a long, long time, because of TBI-induced irregularities in my behavior and performance, and even to this day, the spotty nature of my abilities makes me absolutely nuts.

Luka continues:

Many people have told me that I had autism, but over the years, I am more convinced that it was the result of traumatic brain injuries. Some have said that they see it as absence siezures. And the psychologists see it as dissociation. People point to all that I accomplished in the world’s terms. As if it is proof I should see the last 25 years as a success. They point to pictures when I am smiling. And point out that I am “witty” and that wit takes intelligence. I feel dumb as I struggle to get around their idioms and block out sensory stimuli.

And in the past, I, too, was told I was on the Autistic spectrum — people who met me for the first time would actually tell me that it was okay if I was autistic. I didn’t need to be ashamed of it.

Huh.

For a while, I was under the impression I’m an “Aspie” with Asperger’s Syndrome. It’s not a stretch — many of my family really look like they’re on the spectrum, and I’ve got nephews who could be quickly taken for Aspies. After much research into the nature of Asperger’s Syndrome and autistic spectrum (AS) issues, I realize how much TBI folks have in common with them. Sensory issues are a major component of the AS, and they are certainly an issue for brain-injured folks. The ticks and the soothing and the behaviors that I exhibited in the past, when my sensory issues were unacknowledged and unaddressed (See The Deepest Day) were very much like autistic behavior.

But they stemmed from another source. Once I learned what that was, and how to address it, a lot of that resolved.

I also in private and on many nights, wish that I did not wake up December 1991. I see my life as a complete flop. All my dreams passed me by. They see me as having lived the good life and wasteing my God given talents. Just a squanderer who needed a kick in the ass. I see myself as someone who needed much patience and understanding and encouragement. But one who got that from a special few docs and friends and in the end my precious daughter knows truth of her father who so many told her was crap, but I can’t say people and docs didn’t try; many did but the end, they grew weary and the very best one, discarded me. And down deep I gave up the medical scene. Doctors’ offices are now triggers for ptsd. How sad given all they did do for me even if they diagnosed me wrong. I’m finally saying screw everyone who looks at me as a failure or a nut case. I’m taking a little empathy that I bring to others and going to start giving it to me. I’m 52 and shunned by many. Behind my invisible injuries, seen as con games or character flaws, is a person whose not just had dreams shattered twenty-five years ago, but stopped knowing what I had dreamt of. What constantly hurts me is that I almost pulled it off. At age 39, while on lamictal, I had started to see how far I’d come and started to have live dreams for me. I even learned what “love” in the romantic sense could be as I knew it before 1991. But in early 2000’s I had another brain injury and now I feel that it’s too little too late. And I don’t have much energy to pretend anymore.

Amen to that, for sure. All my dreams seem to have dissipated… though I’m still working on them and still have hope. I’m pretty bummed, though, that I’ve lost so many years to this injury — years I will never get back. Along the way, I have had some help from people who were genuinely compassionate. But one by one, they all lost patience with me. As though their compassion were conditional and intended to gently but firmly bring me through to the other side, where I would start living up to my true potential.

Yah. That was never going to happen. None of them knew sh*t about TBI, none of them knew sh*t about the brain. And a part of me says “screw them all” with a bitter sneer, because their compassion just turned out to be fake.

One after another… concussion after concussion, TBI after TBI… one bad choice after another. But I’m still here. So yeah, screw them.

But as disappointed I am with my life, I do think that I have a responsibility to use the compassion gained by losing my identity to siezure epileptus/coma state. Compassion and empathy are so desperately needed in these times. I cannot waste these byproducts of TBI and PTSD. Aside from the high level anxiety and depression, I feel very brave and strong in a way that I never gave myself credit for and with others yelling in my ear to “wake up” or “schizo” and me not even getting that, but knowing on some level I was the scorn of those around me. Maybe that is an added bonus of surviving, I know the truth and it is good enough for me. I will die knowing I did my best when they thought I was squandering. God bless.

And here is the key — the gold at the bottom of the bucket of mud — compassion and empathy and the ability to reach out to others and help. All the experts in the world are not going to make the world a better place, a more compassionate place, a better informed place. That can only happen through the efforts of everyone “on the ground” who is in the trenches of human experience, day in and day out. I, too, feel a responsibility to use the compassion I’ve gained — and yes, is so desperately needed. I can still contribute, in my “partial-ized” state… my many-times-fractured, many-times-healed state of mind and body.

I too have known what it’s like to have people yelling “wake up” and “crazy” in my ear — so loud, it was painful. People close to me, who were supposed to love me. People who were supposed to be my friends. And I also know what it’s like to not get that — it was just yelling to me, and it took me a little while to figure out what they were really saying, and why.

Yelling at someone who lives with a brain injury will literally not do any good (so why do people do it?).

In the end, it’s the truth that matters. The truth of our experience, the trust we have for ourselves. Finding the value in our difficulties, and offering a helping hand to others. These days, we have greater ability than ever before, to make a positive difference in the world, and even if we think we can’t — I can promise you that you really can. Every interaction we have with others gives us a chance to make a positive difference of some kind. It may only be inside our own heads. It may even be a “fabulous fake”. But so long as we don’t cause harm to others or ourselves, there is always a chance that our words and our work will matter in ways that we never fully understand.

And with that, I wish you a very happy Friday. Thank you luka for sharing what you wrote.

Be well, each and every one of you.

Onward

The road will be long – and surprising things will happen

So, I had a good appointment with my new neuro.

Headaches = migraines. Confirmed.

MRI coming up… partly to check on that pineal cyst that was discovered back in 2009. Everyone has assured me it’s no biggie. Tons of people have them. MRI with contrast. Get ready. Last time, I got a little sick from it. So long as I know ahead of time, I can prepare.

Thought everything was going well. Then got a call from the dr.’s office. Apparently, my insurance company told them that my coverage was terminated on March 1 – two months ago.

Surprise.

And not at all true. Premiums have been deducted from my account like clockwork, and I have coverage till the end of November.

Paperwork.

Huh.

So, after a few harried phone calls, I got people back on track. Not at all true. I do have coverage.

So there.

Onward.

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.

Doctor visit tomorrow

I have my annual physical tomorrow. I had an early dinner, because I have to fast for the bloodwork. I can have some black coffee in the morning. That is it. None of my rocket fuel – just black coffee, with no sugar (which I don’t use anyway).

It will be interesting to see how my bloodwork comes back. I have been eating less red meat and drinking a lot of butter coffee. I’ve been consuming a lot of butter. We’ll see how that goes with my cholesterol and triglycerides.

It’s a beautiful night tonight. My spouse is away on a business trip, and I have the next three days to do just as I please. I’m going to hang out at the library tomorrow afternoon, after I am done at the doctor’s office.  After that, I see my neuropsych, and then I am going to see an independent film, which my spouse would not be interested in seeing.

I’m going to enjoy myself.

But for tonight, I am going to take my shower and go to bed early. And get up early for my physical. It’s all good.

Onward.

Help for a racing heart rate

This post How I learned to slow my heart rate is by far the most popular one on this site, and it has helped a lot of people, from what they tell me. Folks have shared links to it, and hundreds of people see it each week, which makes me very glad.

Some have even said it helped “save their life” — and that makes me even happier :)

It’s actually a really short post, so I have written an extended PDF version of this that you can download and save to your computer, tablet, or smartphone. You can also share it with others. It’s free.

Here it is: How I slow down my heart rate (click here to download)

Please remember: I am not a doctor. I am not qualified to give medical advice. I have just found a technique that works for me and helps me get my heart rate under control in a few minutes. I hope it helps others, but it’s not a substitute for medical care. See your doctor if you have issues and/or concerns.

Thanks. And be well.

Town and Country – Where (and how) we live should determine the treatment approach for TBI / Concussion

Not everyone lives in a city – or thinks and talks like it

Since I’ve been down with the flu this week, I’ve had a lot of time to think about how different sorts of people get — and respond to — different sorts of treatment. This can be for flu… or it can be for traumatic brain injury / concussion. The basic paradigm is the same, across the board, I believe. And it’s something I think we really need to consider, when it comes to treating TBI / concussion.

One thing I have noticed, over the course of my life, is how I am often at odds with my doctors over being self-sufficient… to the point of being considered a “risk taker” with regards to my health. This includes doctors, dentists, neuropsychologists, therapists, nurses, etc. The thing they don’t seem to understand, is that this is how my whole family is – has always been.

See, here’s the deal – even though I have spent half my life in cities and half in very rural settings, I come from a rural family. I mean, frontier-rural — prairie rural. My great-great-great grandparents (on both sides of the family) were some of the “sod-busters” who moved out into the newly opened prairie (my apologies to the Native folks who were driven off — I am really deeply sorry for what was done, and it’s a little horrifying to me that my ancestors benefited from your terrible losses).

Before them, too, my ancestors were adventurers and explorers who traveled far and wide throughout the European world, and lived on the margins of “mainstream” society. They were self-sufficient. Because they had to be. Same with my great-great-great grandparents. They lived miles from the nearest doctor. He was usually a day’s wagon ride away. If you fell or got sick, you had to make do, until he got there, or for as long as you could.

Sometimes you couldn’t even get a doctor.

Given this fact of life, my family — both sides of them — had to develop a self-reliant quality that would keep them alive and keep them from depending too greatly on professional help for their daily needs.

Contrast this with folks in cities or other developed areas, where you can get to professional help within hours, if not minutes. In a city, or in a developed community, the challenge is not keeping yourself alive, it is learning to communicate the details of your ailment/need to the professional who can help you.

Now, let’s fast-forward through time to today — when I am still as independent as anyone in my family, and I look for solutions of my own to issues I face.  My doctors/providers approach me at times as though I am “hostile” to their help, when all I’m doing is having the same orientation of independence that folks in the middle of nowhere have to have. I also live at some distance from the nearest hospital I trust implicitly, so I have to choose carefully when and where I get my medical care.

It’s not that I am uncooperative or hostile. I am rural at heart. Self-sufficient by nature. I am my great-great-great grandparents’ offspring (aside from the Native antagonism), and that’s how I stay alive. It’s how I always have, and it’s how I really feel I have to be, to get by in the world. But when I try to communicate with my doctor, they seem to think that I am being intentionally difficult, simply by needing to stand on my own when I can. I have to be able to function without leaning on everyone around me — which is the way that you can be when you’re in an urban environment; social interaction and interdependency is built into your dna. I’m not knocking leaning on others. If you can do it reliably, then fine. But with me, depending on others can very well shorten my life needlessly, if I disregard my own judgment an the signs I see about my own situation.

The other piece of this, which I think needs to be factored into adequate TBI / concussion care, is class. I’m not talking about taste and money, but the way in which you work and live your life. Working class folks have different ways of interacting with authority figures, than professional class folks do. I think Malcom Gladwell made a really going point of it in his book “Outliers” which is about people who do exceptionally well in life. He points out that people in professional classes are taught (sometimes from a very young age, if they’re born into it) to interact with “authority” as peers, rather than subordinates, while working class folks expect authorities to offer them guidance and direction and clear instructions on what to do.

When you “occupy” a certain class, it’s like you occupy a certain “geography” – and I would wager to say that being part of the professional class is like being urban/suburban in nature. You have more money, you have more access to other professionals (by social association as well as perks and benefits with work, etc), and you are more interdependent with others, from service providers who care for your house and your property and your money and your health (in all its manifestations).

When you’re working class, however, your world is different. The scenery is different. You have different types of friends and acquaintances, and different levels of access to different aspects of life. And you have to be a lot more self-sufficient, just as you do when you’re rural. You don’t have the same amount of money that gives you instant access to certain services and assistance, so you either have to do without, improvise, or find alternatives. That applies to every aspect of life, including health care.

And here is the big disconnect I see between the kind of help that’s offered to TBI / concussion survivors and the providers who seek to help us. At least, this has been my experience… The doctors I know and have worked with over the years have often come from urban or suburban backgrounds. And they obviously are members of the professional class. As such, even if they grew up in urban surroundings, they are now part of a class that is by its nature geared towards interacting with other professional class members as peers, rather than as superiors/subordinates. So, when folks come to them asking for help, and those folks are from working class or rural backgrounds, the docs don’t always ‘get’ what’s expected of them in that relationship. Either that, or the docs aren’t willing to meet their patients half-way with language and communication that bridges the gaps in class and background.

A prime example is my own experience with my PCP – I have a great doc, who it took years for me to find. They have my best interests at heart, and they are very personable towards me. They clearly want me to be well, and we have had some great exchanges. But they just don’t get my need for self-sufficiency. And they seem to think that my wish to be independent and self-sufficient is a sign of distrust of them and/or our relationship. They see my reluctance to get flu shots as being stubborn, when my real rationale is that it’s just plain unhealthy for a human body to not build up its own resistance to heavy-duty infection (as unpleasant as the building up process may be). They interpret my need to call the shots in my own life and make my own health decisions, as disrespectful of their expertise, when it’s just me exercising the very essential mental muscles, so that I can have some say in my own destiny. It’s a little problematic for our relationship, and I need to do some clearing up, when I get a chance.

I may get this chance on Friday. Or not. But whether I do or not, it’s always going to be a factor with them. On Friday, I hope to ask them if they were raised in a city or in the countryside. That should shed a lot of light on the dynamics. We’ll see how that turns out.

In any case, I think especially when it comes to post-TBI care (be it medical or ongoing rehab), the socio-economic background of the individuals involved needs to be factored in and adapted to. This is something that every medical school should teach, in my opinion, because teaching young doctors to realize the differences between individuals based on class and where they live, could truly transform the doctor-patient relationship – especially with regard to such gray areas as concussion / TBI.

Specifically with regard to concussion / TBI, I think it would make sense if there were different ways of instructing Emergency Room visitors to handle TBI recovery. Instructions should be phrased differently, based on the person — not over-simplified “d’oh” language for hayseeds, but plain English for those who need that, versus more technical explanations for those who need that. The English language offers many different options. We should use them all, in explaining proper TBI care to patients who desperately need it.

Beyond immediate medical response and care, I’m sure there are elements of rehab that could also be modified to accommodate different classes and geographies, but I don’t know enough about them to speak to them. All I really know about is dealing with my own doc who seems to think they know enough about TBI and don’t need to factor that into my overall healthcare, let alone discuss the impact it might have in individual circumstances. TBI and the issues that arise from it touch on every single aspect of my life, yet my doctor just seems to dismiss it. And when I bring it up, they just get nervous — perhaps because it’s not something they can fix with a pill or a prescription. And it’s also not necessarily something they can bill insurance for. If they can’t bill for something, they’re not going to spend the time. It’s not that they’re negligent — they are under pressure from their practice to log truly billable hours. I’ve seen that first-hand, and it’s not pretty.

I think, in the end, there are significant aspects of our lives which are not getting due respect, because they’re concealed beneath the layers of socio-economic bias that separate so many of us. And nowhere is it more visible, than in healthcare — particularly in care for those who have sustained TBI / concussion. People who do rough, dangerous jobs stand a greater chance of sustaining a traumatic brain injury, than those who sit behind a desk all day. And those who do rough, dangerous jobs, tend to not have Ph.D. after their names.

What’s more, out in the country where you’re living a bit closer to Mother Nature than when you’re in town, you’re more exposed to the kinds of events that will get you hit on the head. Farming accidents. Building accidents. Hunting accidents. ATV accidents. Falls. Tornadoes. Storms. Floods. Sinkholes.  The list goes on. And if ever there were a need, it’s for people with the power and influence to provide advanced medical care, to make it more accessible to those without the letters after their names and the zeroes a the end of their salaries.

I’m not asking for hand-outs or charity. I’m just asking for common sense. In the end, access to quality care isn’t just about proximity and availability, it’s also about interpretation and understanding.

Sometimes, understanding is what we need the most.

When things don’t go as planned

Sometimes there’s high seas ahead – oil painting by Joyce Ortner – click to see her gallery

I had my doctor’s appointment the other morning, and it went pretty well. I got some antibiotics for the infection that has been bothering my ears and making it hard for me to keep my balance, and I gave my doctor the holiday card my spouse told me I needed to give to them. It was a good call – and I picked out a good card, because it really touched my doctor a lot. They didn’t want to let on, but I could see it meant something. I mean, if you think about it, doctors spend their lives trying to help others. They have their limitations, like all of us, but in the end, their whole reason for doing what they do is to help people.

I have been taking my meds for the past few days, but I’m still having balance issues. I’m going to keep on doing it, and hope for the best. I really don’t want to go back, though. It’s just more opportunity to get put on more meds — which my doctor tried to do, when I told them about the balance issues. They tried to put me on meclozine / antivert, thinking that would fix what was wrong with me, but I told them no, because that stuff just makes me feel rotten and weird and dense, and it doesn’t do a thing for my vertigo. It’s supposed to fix the nausea thing and supposedly make me feel less dizzy, but it’s an antihistamine and the side effects whack me out.

Drowsiness and tiredness and that weird spacey feeling that antihistamines give me, is just not worth it. So, I told them not to prescribe it. Even if they had, I wouldn’t take that stuff. Like I need more crap in my system…Anyway, I can always take Dramamine if it comes to that. I’ve taken it for seasickness and it seemed to help me. At the same time, it still make me feel weird and “off” and the fishing trip I was on was a lot less fun because of it.

Anyway, I had been planning on “having the talk” with my doctor about not being a risk-taker, just having a hard time sorting through the myriad little “issues” I have on a daily basis. For any doctor who is reading this, please take note: TBI can introduce a whole host of physical issues, from noise sensitivity to light sensitivity to touch sensitivity to pain to ringing in the ears… a whole host of physical issues that can cloud the overall picture of one’s health. And that’s not even the mental health issues, like depression and anxiety, which can make everything seem 1000x worse than it really is… or it can make everything seem like it’s nothing at all. This obviously has implications for patients with TBI being able to accurately self-assess their level of well-being. And it’s helpful to address that aspect of our experience.

The only problem is — and I realized this when I was driving to my dr. appointment and was thinking about the best way to broach the subject. I thought about how I would approach it, how I would introduce the topic of my not being a risk-taker, but just a person who struggles with sorting through all the stimuli of each day… and I considered (based on past experience) what my doctor’s response would be.

I’m glad I did think it through, too, because it gradually dawned on me that if I talked about my issues the way I was, my doctor would try to prescribe me something. Or prescribe tests. Or try to DO something, instead of just understanding and thinking things through and letting that inform their approach with me. They tend to jump right into action! as though that will solve anything right off the bat. Sometimes it does. But in some cases, you don’t need a procedure, you need comprehension and understanding and a slightly different way of approaching things.

Knowing what I know about my doctor, after seeing them for a number of years, I really think that if I’d “had the talk” about my issues, I might have ended up fending off a slew of prescriptions and tests — they’ve already tried to get me CT-scanned and/or X-rayed over sinus issues. I mean, I’m sure they mean well, but I am not exposing myself to a bunch of radiation over a sinus infection. Seriously… It’s just not going to happen. Not unless I am in serious danger.

Likewise, I’m not going to raise a red flag that my doctor is going to treat like an invitation to charge. They’ve got a bit of a fight-flight predisposition, and the last thing I want is to have to try to explain and fend off their headlong charges and attacks against what might be vexing me, when all I really want is for them to temper their responses with a little more knowledge. I can easily see them ordering a bunch of tests and prescribing a bunch of meds, in the interest of helping me… and all the while, I just get sucked into the medical system with more crap on my chart to fuel the standard-issue medical responses that pathologize and (over)medicate my condition… when all I really need is some understanding and consideration. All I really need is for people to slow down… but knowing my doctor, that’s not going to happen anytime soon. At least not with them.

So, I didn’t have “the talk” with my doctor, and I’m a little disappointed in myself. At the same time, though, I’m glad I thought it through carefully ahead of time. In a way, I feel like I may have dodged a bullet from a weapon that I had trained at myself. I unloaded the weapon and put it down, and now I’m feeling a bit better. What I really need to do is speak up, in the course of conversations, when I feel that things are going too fast or my doctor says something that doesn’t sit right with me. Sometimes I can speak up and defend myself quickly, other times I can’t. I’m working on that. The times when I don’t speak up, I feel terrible afterwards, so that’s more impetus for me to practice speaking up.

That was something I did do on Friday — I spoke up about the meds and the tests and the assumptions my doc was making. They seemed a little peeved that I was questioning their judgment, but you know what? It’s my body, it’s my life, and I need to do what I need to do. Provided, of course, I’m not putting myself in danger.

Anyway, that’s one example of things not working out as planned, and it being okay.

Another example is last night, when I decided to go to bed early, then I got caught up in going on Facebook “one last time”. I swear, that thing is a massive time-sink, and I have to be careful. By the time I got to bed, it was over an hour later, which just sucks. Oh, well. I’ll just have to nap today. I had planned on doing some last-minute Christmas shopping, but the other thing that’s happening is that we have company from the party last night. Rather than driving home, we had someone stay over, which is fine. But now I need to be social and hang out, instead of running out to the mall. That’s annoying to me. But come to think of it, I actually knew that we might have company staying over, so I’m not sure why I was thinking that I was going to run out, first thing this morning, and take care of that. More annoyance — this time with myself.

Oh well — tomorrow is another day, and I can probably get all my shopping done early in the morning before the crowds hit the mall. I pretty much know what I want, and there’s not much of it, so it will keep things simple. Plus, having less time to spend on it really focuses me. Even if that doesn’t happen, and I get stuck in the crowds, and the lines are long, and I get trapped in the holiday crush, I can always check Facebook while I’m standing on line.

So, yeah – plans. I have them. We all have them. And when they don’t go the way we expect them to, then it’s up to us to decide how we’re going to handle them. I can get worked up and bent out of shape. Or I can roll with it and come up with another course of action. I can get annoyed at this, that, and the other thing, or I can just let it all go and see what happens. When I’m tired (like I am today), I am less able to just let it all go. When I am stressed (like I am over my job, even though I am off on vacation for a week and a half – the residual stress is ridiculous), it’s harder for me to just BE.

I’ve noticed an increasing level of intensity with me – I’m starting to lose my temper again (though inside my head, not out in the world around me so much). I’m starting to react really strongly to little things… like I used to, before I started exercising regularly and doing my breathing exercises. I’m noticing a change, and I’m not liking it much — especially the parts where I’m not rolling with changes as well as I would like to. Things are starting to sneak up on me again.

So, it’s back to using the tools I was working with  before. Despite my good progress, I had gotten away from the exercise and the breathing for a while, in part because I just got so uptight over doing it each and every day like clockwork, and also because I just needed to let it all sink in for a while. I was working really hard on my technique and also my regular practice, and it got to be just another chore that didn’t have much sense to it.  I just hit an impasse with it — maybe I had too many ideas and my head was spinning, maybe I had too much experience that I needed to just get used to… in any case, I needed a break.

So, I took a break. And I must admit it was a pretty big relief to not “have” to do the sitting and breathing every morning. All of a sudden, I had extra time, and ironically, I felt like I could breathe. I was still doing intermittent breathing throughout the day, when I felt my stress level increasing, but I didn’t have a daily practice.

Still, I do feel like I need to get back to a bit of that again. I’ve had my break. Now I need to try it again to see how it helps me… pick up where I need to — maybe where I left off, or maybe somewhere else… Just do what I need to do to get myself back on track and take the edge off this intensity, which has been building and is starting to drag me down.

Things change. Plans change. What we think we can do is often very different from what we can do, which is also different from what we DO do. Life has a way of changing directions on us when we least expect it, and the only constant is change. So, I need to work on my flexibility and chill-ness, so I don’t end up ship-wrecked over every little thing. Yeah… I need to work on that. And so I shall.

Now, to go for my morning walk in the woods.