Great weekend… and a big week ahead.

Calming it down, one breath at a time
It’s all coming at me pretty fast, but if I keep relaxed and keep breathing, it can all happen. It can all turn out pretty well.

I had a full and productive weekend. I caught up on a number of things I’ve been needing to get done for weeks, now. I also got some things done around my yard that HAD to get done before it rains later this week. I feel pretty good about getting those things done. It was not a small task, but I did it.  Woot.

Some important-but-delayed things I did not get done. But I got enough important things done, that it offsets the disappointment. And it gives me more motivation to get moving on those things I didn’t finish (or even start).

I’ve also been working on my breathing. Focusing on relaxing and feeling where my body is “at” — where I’m tense, where I need to loosen up, where my breath seems to have stopped. I need to keep it moving, not get stuck in fight-flight, which is what happens at times, when I hold my breath unconsciously.

Years ago, I was very intent on working with my breath and getting in touch with my body, so I could more effectively manage stress. It was a regular part of my daily practice, and it did wonders for me. Somehow, I got away from that. I got caught up in everything else, and I was in serious survival mode for several years, while I dealt with creditors and paid down my years-salary-worth-of-debt. I lost sight of the big picture with my approaches, and while some things improved in my life — like my job situation and my perception of myself in the professional world — other parts fell by the wayside.

Including my breathing. I’m working on that again. And swimming is a big part of it — since it involves both movement and breathing. And it’s great exercise. Just great, great exercise.

This week is a pretty big one for me. I have my weekly neuropsych appointment, when I work on problems with making progress and getting things done. I have a whole lot of things I need to get done on a regular basis. I’ve been doing them for years, I just haven’t been doing them as efficiently as I should – and it shows. I may need to take some of them off my to-do list and put them on my ‘would be nice to do’ list… and then not worry about them till later.

One project, in particular, has been drawing a lot of energy off the other projects I really need to do. It’s training materials for people who are in a certain part of the job market and don’t understand how things work.

The thing is, if I start on that, it’s going to be pretty all-consuming. It’s not just some training materials — the whole plan also involves public speaking, public appearances, and a lot of writing and publishing and networking. And I just don’t have time for that, now.

It’s a great prospect for me, and it could bring in a fair amount of money for me, but I have so many other things I want to be working on, I can’t really afford to spend the time on it, to do it full justice.

So, I’m tabling that — putting it on the “back burner” to simmer for a while. I’m really treating that like my backup-plan “B”, in case I lose my job or the 9-to-5 thing doesn’t work out for me. That would be the ideal time to cut this project loose and set it free — when I actually have time to fully devote to it.

I’m in the process of cooking up a number of other projects, many of which I find really inspiring and motivational. So, I need to make room for them, and find where I can fit them, while not burning out. I’ll work through this with my neuropsych this week — and in later weeks, as well.

In addition to that, I’ve got a town meeting this week, when we’ll discuss the fate of a company that wants to expand. I’ve had my ups and downs with the board I belong to — they don’t always seem to respect me, and they sometimes ignore me or talk over me. People in town have laughed at me, when I asked one of my “stupid” questions, which was completely disrespectful (and ill-advised, since the board I’m on makes decisions about what people want to do on their properties, and I’m not the sort of enemy you want to have). I let that go, though, and I continue to serve on the board. It connects me with the larger community, and it also puts me on good terms with the local authorities. It’s a lot easier dealing with the local police, when they run my personal details and realize I’m also an “enforcer” who serves the public good.

I probably would have gotten in more trouble, had the friction not dissipated when the cops realized who I was and what role I play in local government.

Another thing is, I’m seeing my neurologist later this week to talk about the headaches and my other issues. Actually, I’ll be seeing their assistant, as the neuro proper has kind of washed their hands of me. They didn’t find anything on the MRI (even the DTI-MRI) that gave them any clues about what was going on with me, and since they can’t diagnose me with anything, how are they supposed to treat me (and bill the insurance companies)? I feel for them, but I don’t appreciate being pushed aside.

Fortunately, while I was sorting through my stack of insurance statements and various papers and notices, I found a promotional flyer for one of those services that gives you access to second opinions by highly qualified physicians and healthcare experts. I’m going to check in with them, to see if they can help me, because this current neuro approach is not working. I really don’t need to take hours out of my day to drive to an office where I’m just going to be brushed off, and my concerns aren’t going to be taken seriously.

Just as an example, the neuro-in-charge told me that my concerns about falling and having a worse TBI than the one I had before, were unfounded. They told me that concussions are NOT cumulative, which contradicts just about everything I’ve read… and after weeks of consideration, I have a lot of reservations about their abilities and willingness to be of help.

Then again, I do fit the profile of someone in the “miserable minority” — I’m very much like the first individual profiled in that seminal 1996 paper, which touched off a chain-reaction of further studies and diagnostic / treatment approaches to folks with lingering post-concussive symptoms. So, maybe the neuro was referencing that profile.

My own feelings of insult and dismissal aside, the “miserable minority” approach may have done more to perpetuate misery, by steering away from the functional and structural issues that come along with traumatic brain injury, and focusing so deeply on the psychological factors.

I’m not saying psychological factors don’t come into play. I’m saying there’s more to it than that, and it’s my belief — after many, many years of unfruitful and counter-productive therapy approaches, followed by amazingly fantastic progress after far fewer years of basic functional retraining — that a focus on psychology, without addressing the underlying neurology, has done more to perpetuate PCS than anyone would guess.

Of course, people mean well. They’re just misguided. And they’re so caught up in proving that they’re right, and they deserve a place at the rehabilitative table, with all the respect due highly trained professionals, that they “circle the wagons” and get Balkanized — cut off from others, hostile and uncooperative and territorial, and always ready to battle over some piece of territory.

Unfortunately for those of us who need their help, we get sucked into that dynamic, and that’s no good for anyone.

But there it is.

There it is.

Friday is free and clear for me — no meetings, no appointments. I do need to do some shopping this week to pick up some black pants for my business trip next week. I’m going to be presenting at a client conference, and I need some black pants. Or maybe I don’t need to go shopping. I have a couple pairs of black pants I can probably wear. They’re just not as casual as the conference wants us to be. It’s definitely “dress down” — although we still need to present in a professional manner.

I also need to practice my presentation. I’m doing one technical talk that’s only about 10 minutes long, and I’m going to be “on call” to answer questions about the company’s full product line, which is a pretty extensive collection. I just need to  have a quick 2-minute “spiel” I can launch into, for a variety of topics. That’s probably the biggest undertaking of this week, and I’ll be practicing while I’m driving to and from work, as well as to and from my appointments.

Memorizing things used to be easy for me as a kid. I can still memorize things, if I go over them 30+ times. 35 times seems to be the magic number, but I don’t have that kind of time — 35 times for each of the 10 different spiels is 350 separate practice sessions. At 2 minutes apiece, that’s 700 minutes (11.66 hours), minimum. I can break it up, sure, but it’s still a lot of time to spend.

So, again, I’ve got to pick and choose.

And so, I shall.

Onward.

Slogging through – some days (weeks) are like this

solitude-imageI don’t know why, but this week has been a hard one for me.

It seems to be taking forever.

And yet, I feel like it’s still Monday, with precious little getting done.

I’m tired. And when I’m tired, everything gets harder… and feels longer. I know that much.

I have been thinking a lot about the shift society needs to make in its thinking — and talking — about concussion and mild TBI. That’s taken a lot out of me.

Also, my spouse got test results back from the doctor, and the warning-sign numbers which should be going down, have been going up. They’ve got a couple of chronic health conditions that they need to manage closely, and they’ve really been slacking off over the past months. They also skipped a couple of blood draws, because they were anxious about doing it. So, for months they have not known that their numbers are high — which really does a number on their system.

Tomorrow they need to go back to the doctor (and take me with them) to discuss what to do.

I know what I’m going to do, in addition to sitting there and listening. I’m going to have a talk with the doctor directly to see if they can recommend that my spouse start seeing a neuropsychologist for help. My own neuropsych has helped me tremendously with my thought process, and they’ve strengthened my ability to think things through to an amazing extent.

I really think my spouse could benefit from this, as well. They have neurological issues, and they have never addressed them with a neuropsychological professional. Their neurologist is almost useless, other than for prescribing the meds they need.

The original neurologist missed identifying both of their strokes, and also said they were on the opposite side of the head than what they were (possibly from misreading the MRI). And after we questioned that first neurologist about a medication they prescribed because all the literature said it could mess with certain very important levels, they pitched a little hissy fit and tossed a bunch of medication writeups at me and told me to pick one myself, which I did. And it was a good choice. My spouse has been successfully on that med for nearly 10 years. Of course, having your patients pick their own medications raises some issues about medical care, but let’s not get into that right now.

This new neuro is only slightly better, telling us that the medication we rejected because of clearly documented dangers (in the literature, as well as clearly on the warning label), was perfectly fine. Their particular sort of narcissism presents as deep-seated insecurity and emotional neediness… where the original neuro’s narcissism was all about them being an unassailable expert who was, basically, a god (tho’ clearly they were not), who was inconvenienced by patients who interrupted their European vacation schedule.

Unfortunately, my spouse is so profoundly anxious about doctors, that they refuse to look further for another. Even though the current one is basically just a pill dispensing machine, and good for precious little else. I really believe my spouse’s issues have to do with poor executive functioning and short-term working memory problems. In additionto the strokes, they’ve had at least one CBI (Concussive Brain Injury or mild TBI) that I know of — they slipped on the ice and fell back on their head while getting the mail one day about 15 years ago, they were dazed and confused, and for months after that, all they did was yell at me and get freaked out over… everything.

So, their thought process is not great. Which just feeds their anxiety. I saw a mention of some research about how anxiety is tied to short-term working memory issues, the other day, but I can’t locate it now. Anyway, it’s clear to me from watching them for 25 years, that their attention and memory issues just feed their anxiety. And that causes them to make poor decisions. AND that leads to yet more problems. Including the erosion of their thought process. It’s a vicious cycle.

So, a neuropsych might possibly help, where meds and exhortations to “get it together” simply don’t work.

That’s more than I’ll be able to say tomorrow. I need to find a way to put it, so that the doctor can hear it. And I need to say it in front of my spouse, so they don’t think I’m plotting against them. They get a little paranoid. When I step back and look at my life and the way my spouse behaves, it just looks crazy. They look mentally ill. Which they are.

But they have other strengths. And they’re not like this all the time. It’s just when it’s extreme.

Then “the crazy” bubbles to the surface. And it’s not much fun, I can tell you that.

So, the main thing is for me to stay calm and cool and collected.

Which of course is a bit of a challenge, because my work situation is pretty uncertain, and I’m feeling the burn of being a 50+ individual contributor in an industry that favors 25-year-olds with mad skills in the latest technologies. I have experience and a level head. But I’m not in a position to sell myself cheap, so if a company can get two employees for the price of one, they’re usually going to do it.

Anyway, this might be moot, if my old employer (who was very sad to see me go and would love to have me back) has a spot open for me. Looking back, I realize now that they had a pretty awesome structure — since they’re based outside the USA, and they operate by European norms, where people are actually valued by the company rather than tossed aside like so much detritus, they have all sorts of safeguards in place to actually keep people in their jobs.

It’s a very different scene than high tech the States, where everything is so much in flux, and people aren’t people — they’re human resources, to be shuffled around, as it suits the folks in charge… and out, if it’s more profitable to do so.

Last week, I saw a bunch of news articles on the increase in mortality among middle-aged white folks. The authors were puzzling about why that’s so. If they have to puzzle, they aren’t paying attention. And they clearly don’t realize that America is a place where it’s easier to die after you turn 50, than it is to live.

It’s hard to not feel disposable in this society. It’s very hard, indeed.

But some good rest would help, I’m sure.

Find a New Neuropsych Step #3: Scout around for neuropsychs

I want to do more than keep my head above water.
I want to do more than keep my head above water.

Step #3 in finding a new neuropsychologist is : Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.

Now that I’ve got my list of issues to track, and I’m thinking about what they really boil down to, I need to look around for who can help me.  Years ago, when I was scouting around, I did not have the level of information and familiarity I do now, and it was like trying to find a needle in a haystack. Not only were there so many details to consider (and my brain made it even worse by complicating everything and taking in every single detail without distinction), but it was treacherous going. Like a needle will jab you if you’re not careful, a neurologist whose agenda is to prove you do not have any problems, is also a hazard.

Because there are plenty of them out there.

So, first, I have to screen out the folks who could be dangerous. I’ve come across local brain injury support groups who actually keep a list of those kinds of docs — they can ruin your life.

And then I need to find friendly faces — again, there are local groups that have contacts and recommendations. My local BIA chapter actually has a list of neurologists and neuropsychologists who “get it” and have proven helpful. I have an old list from before – but I may reach out to get an updated list.

I also need to check around with other people to see if they have any recommendations. I’m not very well connected to the brain injury scene in my area, because I can’t take the chance that my anonymity will be breached. I have to keep my semblance of normalcy together, and not let word get out that I have a history of brain injury. That could sink me, and as I’m the sole provider for my household… well, I’m not all that keen on being homeless and pushed out of society, which is pretty much what would happen. I don’t have a lot of folks in my life who are fine with brain injury — I found that out, when I was disclosing to friends who I thought would understand. They didn’t. They’re not my friends, anymore.

So, I need to make sure I’m smart about this and keep things simple. I also don’t want to go chasing the wrong things, as I feel I sometimes have with my current neurospych.

As I track my issues, I am actually seeing that my sensory issues and physical issues are a major contributing factor to my difficulties. Fatigue is the #1 complication I have with mild TBI, and it complicates everything. Being on constant sensory overload, day in and day out — with the fluorescent overhead lights, the busy-ness and activity at work, noise, the deodorizer in the rest room that’s as nasty and pervasive as perfume being sprayed on you in a department store — it’s exhausting. It really takes a lot out of me, and whatever cognitive reserve I’ve got on hand, depletes rapidly when I’m overwhelmed.

So, I need to look around and find someone who can help me with my sensory issues — not just cognitive ones. It might actually be the case that while I test fine under rested conditions, when I am tired and overwhelmed (which is usually the case), that all degrades. So, perhaps it would have made more sense to evaluate me when I was exhausted, since that’s my “default operating state”.

And it could be that my neuropsych has not gotten a full view of the impacts to me, because we’ve been meeting (by my specific choice) on a day when I am about as close to “on” as I can be — Tuesday afternoon, when I’m warmed up for the week, but not completely wiped out. So, that’s prevented them from getting an accurate view of how I’m really functioning.

Anyway… I need to find a neuropsych who is familiar with sensory processing issues, as well as other physical issues. Because I swear to God, I struggle so much with them, and my physical symptoms are so intrusive and corrosive, I don’t feel like I can actually make any progress, anymore. If anything, I feel like I’m going backwards. Being exhausted, day in and day out, is an issue. Eventually, it will beat the life out of you. It’s just a matter of time.

So, my hope is that I can find someone who more fully understands these problems all across the spectrum — physical first, then mental, then emotional — and who can help me work through all of this in a common-sense fashion. It would be nice to feel like I’m making some progress again.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

Find a New Neuropsych Step #1: Record the issues I’m currently having

The pieces are all there. We just have to put them in their places.
First, I need to collect the pieces.

Step #1 in finding a new neuropsychologist is : Record the issues I’m currently having and how they impact my life. Wherever possible, have real data behind my rationale for seeking help.

So, if I’m going to work with a new neuropsychologist, I need to be able to tell them why I need help. That means tracking the issues I’m facing on a regular basis, and figuring out if they are significant enough to warrant getting help.

In my case, there are certain things I would like to address, because they directly impact my personal and private life on a regular basis.

At the top of the list is the processing speed that seems to be getting slower.

Next, is my increasing difficulty with comprehending what’s being written (in emails and notes) and said to me. I am having a lot of trouble taking it all in the way I used to.

And then there’s the trouble I’ve been having with increased distractability and getting much more scattered than before. As is often the case with new jobs, about four months in, I start to lose focus, get scattered, and I lose ground. I had a very foggy/fuzzy couple of months behind me, which is patently clear as I attempt to piece together my end-of-year self-assessment for work. I am having trouble putting it all together — much moreso than three months ago.

I’m also having trouble getting started with things. This has been an ongoing issue with me, and I’ve tried to get help for it, but I’ve consistently been told (in so many words), “Your test scores don’t indicate difficulties with that part of your brain, so it really is a willpower thing.” I dunno. I really want to get started on things, but I sometimes have trouble figuring out how to get started — so I don’t. It’s becoming more and more of a problem, and I can’t seem to get help with it.

I’ve been organizing my study, and I came across an old performance review from two jobs back. My boss back then (about 4 years ago) warned that I was late finishing my projects, and that was tarnishing my otherwise stellar reputation. My performance review was also acceptable, rather than exceptional (which it should have been).

Part of that was the fact that my boss really didn’t like me and was threatened by me.  Part of it was that lateness and never finishing anything on time was a pretty big issue — which affected my performance, as well as my income. So, even if I did feel better about myself and my abilities to deal with life (as my neuropsych noted), the fact of the matter was, I simply wasn’t delivering on time.

Feeling good is great. Delivering on time is even better. In fact, I would have settled for being unhappy but more productive. That would have made a big difference for me professionally. Ultimately it would have reduced stress… and contributed to my happiness.

Anyway, these are some of the specific things I need to address on a neurological level. I need to know how the brain works with these things, and I need to understand how to tweak my performance – what, if anything, can I do to improve in these areas?

I need to map out exactly how these issues are getting in the way, list the things I have been doing on my own to address them, and talk about the results I’m getting (or not getting) that are affecting my performance at work and at home. I would feel a whole lot better, if I could take some positive steps toward fixing these issues.

  • Processing speed
  • Comprehension issues
  • Distractability
  • Getting Started / Initiation

If I can find someone to help me “hack” these problems, that would be great. It would be a step in the right direction.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

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.

If your insurance company denies a test or treatment your doctor ordered

Try this:

insurance-denied

This is one thing Facebook is good for – in addition to the folk health remedies, various lifehacks, and funny pix.

I wish I felt worse about this impending loss… but I don’t

So, my neuropsych is retiring in the spring. I’m probably in a state of denial,right now,with the inevitable progression from that state of mind to anger, bargaining, sadness, and acceptance.

At least,that’s how it’s supposed to go.

But I’m off to a strange start, not feeling much of anything other than genuine happiness for them — and being a little relieved. Similar to my PCP passing away, this impending loss will solve some issues for me — issues that I had been planning to resolve by just terminating my relationship with them.

Supposedly I’m supposed to have a reaction to this. And back in the day, I would have. But since my fall in 2004, I haven’t been able to muster the emotional connection with others, like I used to. I don’t know what happened to me. I have been thinking it was just a by-product of getting older, getting crankier, and ceasing to give a damn about the things that used to get me in such a whirl before.

Maybe it is… but other people my age seem to be able to forge strong personal bonds with others… especially others who help them on a regular basis. This working/therpeutic relationship I have with my neuropsych is the most stable, constant connection I’ve had — probably ever.

And it’s going away in 5 months.

I guess I’m feeling a bit sad, in some ways, but not as clearly as I used to feel before 2004.

I think part of it is, I’ve never really understood clearly how I was supposed to feel about them, in the first place. I go there each week to work, to make progress, to get my life back on track. It’s not for emotional support or whatever. But they seem to think that’s what things are about.

I dunno. It’s a bit confusing for me, even though I know it’s not supposed to be. Maybe I’ll sort it out.

Or maybe it will be like when my doctor passed away — a burst of regret and sadness and frustration that they had to suffer as they did, but not a ton of loss and regret for me. In a way, I had already moved on. And I sort of feel that way about my neuropsych, who I have felt myself drifting away from for a number of months, now. As though I expected something like this to happen.

To be honest, at this point, the most distressing thing about it, is that I’ll have to adjust my schedule and get acclimated to a new neuropsych. I need to keep working with someone, because if I can’t talk to someone who knows neuropsychology, the rest of my life becomes a tangled mess of not being able to put things in order. I’m surrounded by lazy-ass people who just want to be comfortable in life, and who think my issues are mental or emotional or just character-based. It drives me nuts. I need to interact with someone who is A) aware of how TBI affects your life, and B) is dedicated to improving both themself and helping others do the same.

Anyway, enough about this. Shrug. The day is waiting.

Onward.

TBI recovery in mind and body

I had an interesting thing happen the other day. I got my test results back from my physical, and the doctor who sent them did not send the full numbers for my lab results. They actually just sent me a sheet that said whether I had passed or failed all of my markers.

This is so not helpful, I can’t even put it into words. I was depending on them to send me a full report with the full statistics and not have to spend a lot of time going through analysis of those numbers. I just needed the exact results. I didn’t need their commentary, and I didn’t need them to simplify things for me. I probably should have been more clear about my needs and my expectations, but this is the first time this has ever happened to me. I have never ever had a doctor just send me a pass/fail report on lab results.

No, correction, my last doctor, who has since died – rest their soul – actually did once send me a note in the mail that said all of my lab results looked good. That’s even worse. I don’t know which is worse, having somebody just dismiss my interest in the actual numbers and say “yeah you don’t need to know about this”, or having somebody do a half way analysis of my numbers – not in any larger context not in the space of anything extended, but just as a one-time look.

This is one of the problems that I have with doctors. That they control the information or they just assume that people do not have the intelligence or the proclivity to actually analyze our data and derive meaning from it.

The ironic thing is, their spouse works at the same major multinational company that I do, and much of our business revolves around data. So I work daily with people who are keenly interested in data, and so does their spouse, and yet somehow they don’t get that I would actually have an interest in the actual data that was pulled my body, on my time, using my insurance.

My data is mine. My body is mine. And I really do not appreciate having someone just tell me oh you don’t need to know about your body you don’t need to know about your data you don’t need to know about your health. This is one of the things that makes me crazy about modern medicine. it really is all about control of information and there are a lot of doctors out there these days who believe that their authority should be paramount and they hold on to information. I was talking to someone the other day I had said that in the 19 sixty’s doctor started to be trained to be more collaborative, rather than dictatorial. And since then they have not then so focused on being the ultimate authority and everything. Rather, they positions themselves as trusted experts in Healthcare.

Maybe that’s true, but my experience with doctors has not been that great over the years I’m part of that seems to be related to them still needing to be the authorities in the situation. They may want to be collaborative but there’s still insisting on being at the top of the food chain, when it comes to who decides what.

It’s hard to know sometimes what to make of all of this. I need to find a new doctor I know that. And I feel quite stymied and looking for another doctor. The big thing with me, is that it is about my health it is about my wellness it is about my ability to live my life as best I can, and it feels like doctors are getting in the way rather than helping me.

Actually, it’s the old healthcare paradigm that’s really getting in my way. Its the fact the medicine – formal medicine, which has been peer reviewed and approved and blessed by the powers on high – is so far behind where most of us needed to be these days. There is so much focus on risk mitigation. There is so much focus on avoiding lawsuits. and the practice of medicine Really suffers as a result.

Of course there are alternative therapies, and there is complementary medicine. But it is so hard to find anyone in the medical field who will willingly and easily collaborate with alternative complementary medicine. And it seems to me that in fact a lot of the animosity towards alternative and complementary medicine, such as going to see a healer of some kind, really misses the point about why people seek out that kind of care.

People seek out alternative care to get something that they cannot get from the medical establishment. And that something is actually care. It strikes me as ironic that the medical establishment refers to himself as healthcare when what they’re really doing, apparently for the most part, is disaster prevention or catching people up after something awful happened. I suppose in an extreme sense it is health care because they’re bringing us back from the brink and they’re making us reasonably whole again to get on with our lives but in terms of long-term health and wellness, I don’t see them offering all that much.

I do find it telling that the person I was discussing health care with the other day has a doctor in the family, and although the person I was talking to is a very accomplished professional in their own right, they still have this wide eyed admiration for medical people, and they seem to have bought into the hype that’s been pitched to their family member. I get that every industry needs to protect itself and standards have to be kept, but the brainwashing about the noble causes and the character of everyone involved, the mythology around how right they are and how wrong everyone else’s, and that mystique that they develop around medical doctor status is something that is evident, and also needs to be taken into consideration.

So all of this is a long way of saying that in my TBI recovery, my physical health has really come front and center. What I have come to realize over the last 12 years of experience, observation, I really looking closely at what was going on with me while trying to dispense with the blinders that we all have about what we are experiencing and what that means, is that the body play such a critical part in TBI recovery.

In fact thanks to new research that’s come out and that people are starting to pay attention to – and it’s always helpful of people do pay attention to new research, because what could we do if they didn’t? – the physiological processes that get fired off by the brain make a huge huge difference in the experience and the recovery of the individual who has been brain injured. A brain injury is never only inside the brain it is also throughout the entire body. The brain is command central 4 all of the body’s processes. Cannot enter the brain without entering the body as well – or at least affecting it. There is inflammation that happens. There are crossed wires that happens. There is the biochemical reaction that goes along with fight flight, which then either short circuits you completely, or simply prevents you from learning the lessons that you need to learn. It’s a combination of brain body and all of the things that make it possible for them to communicate with one another, and act as one.

So for me to continue my recovery, I need to really take care of my body and I can’t very well do that, if my doctor won’t give me my numbers. this is one of the things that I think keeps TBI and concussion survivors really heal from their injuries. There is the assumption that we are unable to think clearly or the cognitive we capable. I experience that with the physiatrist who I was seeing very briefly several months ago. As soon as they found out about my history of mild TBI eyes, they started treating me like a child and they acted like I needed to be spoken to very very slowly. Granted, I had told them on my intake form that when I’m tired I sometimes don’t get things the first time, but the whole way that they approached it, I found very dismissive and also not very enlightened.

This is one of the things that makes it so difficult to do a thorough TBI recovery in short order. I am convinced that if doctors could more fully understand and appreciate our situation if they really understood as people what we are experiencing with TBI, it would make it at least a little easier for them to treat us more effectively, and also improve their practice of medicine. I don’t think that any doctor really wants to run around and do harm to people – well, I suppose some do, but those are extreme exceptions to the case – and I would think that any kind of insight or additional learning that would help them better understand what people go through when they experience a traumatic brain injury, would be welcome within their community. However, it seems that they are much more interested in maintaining their status as experts in the world of medicine, then providing the best care possible in ways that their patients actually need it

I know that I am raging against the machine, and there is only so much that can be expected considering all of the generations of tradition that has been baked into this whole way of practicing medicine, but I think it’s still worth considering.

The other thing is, even though I might get medical care that doesn’t really seem to suit me that well, and is more infuriating than it is helpful, this is not the end of the story. I am NOT 100% dependent on doctors for my health care. I am fairly self sufficient in terms of seeking out information about my condition as well as being proactive in taking care of myself. I do a fair amount of reading and research in nutrition healthy living exercise and the latest research that shows us how our bodies work and how we can work better with them.

There is a wealth of information online that we can access that tells us many things that we need to know. And a lot of it is put in terms that everyday people can understand. Now of course, a lot of it is total crap, and you can’t believe a word that people say, or worse – and this is a very tough thing about the Internet – maybe half of what they say is correct, but you never know which half is correct so you have to do additional research and you have to do additional analysis and follow up and take everything with a grain of salt.

In the end, I think that the better we take care of our bodies the better our brains respond. I know that’s true with me, as my recovery has just been phenomenal, & I have incorporated many many physical aspects into it. From the food that I eat, to the exercise that I do, to the supplements that I take, as well as just paying attention to how I’m feeling and understanding how my physical feelings actually affect my mental health I have put together what feels like a very solid recovery.

Now, I have my bad days – and yesterday was one of them – but they are few and far between, compared to how they were before. Before I was a ticking time bomb a walking disaster zone, & I could not figure out for the life of me what was wrong. Everything was wrong. And I didn’t know why. That has completely changed and taking care of my physical body has played a huge role in that.

There’s more that I would like to say, but this post is getting long. It has been a long week, and I have been pretty busy at work, so I’m tired, & I have another busy week ahead of me. so I’ll stop here and get on with my day.

Have a good one and don’t forget to enjoy.

Vitamin D3 is your friend

Vitamin D3 is your friend - learn more at Found My Fitness - http://foundmyfitness.com
Vitamin D3 is your friend – learn more at Found My Fitness – http://foundmyfitness.com

#1 Takeaway: Vitamin D3 is essential for brain health, healing, and a healthy system. If you read nothing else, please make sure you get enough Vitamin D3. You can get it at any drug store or supermarket. It’s possibly one of the cheapest ways to heal up and stay healthy.

Including brain-healing and brain-healthy.

And it’s made a huge difference for me.

Now, for years my Vitamin D3 was low. My doctor (rest their soul) measured it each year and told me to just take 3,000 IUs a day, I’d get better. But they never explained to me exactly *why* I needed to take my Vitamin D3, other than it having to do with my bone density.  So, I never actually took as much as I needed, and sure enough, year after year, my numbers went down… and down… and down… dangerously low. And I stayed that way in the interim, which can’t be good.

This is the doctor who just passed away last month after an 8-month battle with sarcoma. I really liked them, yet in some respects, I felt I wasn’t getting proper care. And if they hadn’t passed away, I would be working with another doctor. The Vitamin D3 thing is a big reason for that.

All the while I could have been checking intermittently to see how I was doing. But it wasn’t until I’d been low-low-low for something like 3-4 years that they actually scheduled follow-up tests. And then my levels bounced back. Because my neuropsych explained to me some of the importance of Vitamin D3 to cognition and feeling like a normal human being… and I also did some research on it.

But did my doctor (rest their soul) tell me any of this?

No.

And that is a huge problem.

I’m going for my annual physical today. I’m 4 months overdue, because I was waiting for my doctor to return, which they never did. I’m going back to the same practice they were at before, because they have all my records, and I don’t feel like starting from scratch right now. After I have this physical and get my blood drawn and get my numbers, I’ll move on. I’ve found some doctors who look like possible candidates, and I’ll be interviewing them over the coming months. I take my health very seriously, and I am on a preventive care mission, to keep things from spiraling out of control like they have before… and also to make sure I am healthy for a long, long time.

I’ve just now come out of the woods with my TBI issues, and I don’t want to squander any more time on needless suffering and drama.

Vitamin D3 is a big part of it. I take 3,000 IUs religiously each morning – with my calcium-magnesium, B-Complex, Glutathione, Taurine, and a probiotic with 45 billion little bacteria to keep my gut healthy. I started with the Glutathione and Taurine a couple of weeks ago while I was on vacation, and I can’t sense any detrimental effects, so I’m going to keep taking them.

The king of them all, however, is Vitamin D3. I’ve been listening to Rhonda Patrick talk about it on Joe Rogan’s podcast. Here’s a video of it — it’s long — 3 hours. But the first hour has a lot of good stuff in it about Vitamin D3.

Apparently, D3 controls a whole bunch of things, and according to a theoretical paper by Dr. Rhonda Patrick, low Vitamin D3 could be implicated in things like autism. It’s all very complicated, but seratonin is involved, which is also related to gut inflammation, and it also has to do with other conditions where the gut is inflamed.

And I wonder if low Vitamin D3 hasn’t played a role in my brain not functioning properly — as well as often having been taken for autistic by people who just met me. I know I have a lot of abdominal inflammation — that’s another thing that my past doctor (rest their soul) said, every time I went in for an annual checkup. They noted it, but they didn’t actually take steps to do something about it. It’s like they expected me to tell them what to do.

I dunno. So much of the research is new and emerging, it’s hard to keep current, but if there are persistent issues that show up every single year and don’t change over time — and those issues can be connected with other health issues — then it seems like a prudent thing to actually do something about it.

Right?

I think so. And after today, I’m looking for another doctor who will take a preventive approach — not treat the human body like an overly complex system that cannot possibly be understood by any one person. That’s like saying, because I don’t understand the minutiae of electricity, I  shouldn’t change the lightbulbs in my house, turn off the lights when I leave a room, or use energy-saving appliances. It’s like saying, because I don’t understand precisely how your car functions, you shouldn’t clean it or put gas in it, or do preventive maintenance. You should only take it to the mechanic when you hear a sound you cannot explain, or you break down by the side of the road.

People take better care of their vehicles than their bodies, by and large. If we know how to take care of our cars, why not apply those same principles to taking care of our bodies?

And why not take Vitamin D3? Seriously, the cost is so low, and the benefits are so immense, it only makes sense. It might even help clear up cognitive/behavioral issues for you — like it did for me.

I cannot say enough about this. And the more I listen to Dr. Rhonda Patrick talk about it, the more convinced I become.

Take your Vitamin D3 people. It is the one thing that will look out for you, when no one else will.

 

 

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?