From good, to … where?

More quandary… I woke up early again today. I think I’m just jazzed about having extended time off, and all the ideas I normally don’t have the time to really dig into are pushing at the edges of my thought process.

They’re like neglected children — or puppies — all clamoring for attention.

What to do?

Well, first, I need to realize that this is a really good problem to have. A lot of people never figure out just what they want to do with their lives. I know what I want to do, and I’m doing it.

I just need to figure out how to make the most of it — and also get support from others to keep doing it. I spend a whole lot of time researching and writing and publishing, yet so far, the majority of the support has been motivational, moral support. I’m not knocking that — far from it. The “emotional paycheck” (as they call it) has been hugely important to me.

The thing is, emotions don’t really pay the bills, and I’ve gotta do that. So, I spent the lion’s share of my time working jobs that will get me money, so I can keep up this work… keep it going. And do more.

The other thing that’s kind of throwing me off, is that I’ve gotten into a pretty good space with my life. Sure, I still have issues that make my days “interesting”, but they’re manageable. I’ve figured out how to either ameliorate them or work around them or just plain ignore them and move along with my life. All the energy and time and focus I spent on identifying my issues, addressing them, coming up with new strategies and techniques, etc., etc.  …. well, it’s all paid off. And I’m in a really competent space right now (when I’m not mouthing off to police officers and managers at work, anyway).

And now where do I go?

I mean, seriously. I’ve felt like I was barely breaking even, for most of my 50 years. I’ve always had the sense that I was playing catch-up… and I wasn’t catching up very fast.

Now that I have the sense that I AM caught up, what do I do with myself?

If all you’re doing for your entire life, is trying to break even, and your whole life is geared towards laying low and minimizing risk, how can you transition to stepping out and above and beyond, when you no longer have to be chasing an ever-elusive goal?

If all your life you’re geared towards keeping things from blowing up, what do you do with yourself when you don’t have to be on constant guard? What do you do with all the energy that’s been spent on moment-by-moment damage control for so many years, when you’ve managed to achieve that level of control at a higher level?

And how do you keep yourself from imploding or going supernova from all the energy that comes up, when you’re not in constant fight-flight mode?

That there’s the question I’m wrangling with, this weekend. I have a lot of things I want to do, and that’s great. And in addition, I need to get used to the idea of moving forward into the unknown — and NOT having it all blow up in my face.

Well, this certainly keeps things interesting.

Onward.

Off to a great start this morning

I didn’t get quite as much sleep as I wanted, last night. After dinner, my spouse and I ended up watching a documentary about people who left a cult, and it was so fascinating, I couldn’t look away.

Kind of like a train wreck. But the film was really well-made and engaging, so it wasn’t all bad.

Anyway, I woke up around 6:30, which means I got 7 hours of sleep, and I rode the exercise bike for half an hour or so. I read a couple of little ebooks and listened to music and also lifted light weights while I was riding. I have a couple of wrist weights that slip over the handle bars of my exercise bike, that I can use to work out my arms.

I have a pretty exciting weekend ahead – with lots of lounging about, going for hikes, and resting — and no, I’m not being facetious. I really am looking forward to being able to just get off the leash and kick back. Unwind. Not worry about much of anything. Work on some of my projects. Finish some things that I haven’t been able to finish… and spend time just hanging out with myself without any pressure or requirements, other than what I want to do.

Pure magic.

It’s funny… I was having a conversation with a co-worker yesterday afternoon. We’re both contractors at the company where we’re working, and we both feel a huge amount of pressure to constantly perform at our highest. They said, “I feel like I’ve been on a 2-year-long job interview,” and it’s the truth. There is such a cultural divide between the permanent full-timers and the contractors, it’s wild. And we are under constant pressure to perform, because we’re so marginalized.

One of the projects I’m working on this weekend, is putting together a portfolio of projects I’ve brought to life at this company. I really have done some amazing work, which nobody could figure out how to do. There were some projects that had gotten started, and then just died on the vine, because nobody followed through. But I stepped in and got it done. I’m not getting egotistical. I’m just saying…

And it’s happened a number of times.

Anyway, I need to collect the evidence of that, add a description of the situation, the hurdles, the challenges, and what the eventual outcome was. Some of the things are amazingly cool. Others are interesting only to the 15 people on the planet who care about the inner workings of obscure technologies. But they all show results, and that’s what I have to lead with.

I think, if anything, this is going to put things in better perspective for me. At least show me that I have something to show for all my work. Because in this company, everybody seems to have amnesia — except for when you screw up.

Folks remember that stuff forever.

And I need to send out my resume to folks I promised it to.

I need to have a standard response for all these recruiters who contact me. Kind of like a form to return to them that tells them what I’m looking for, when I’m looking, and how best to contact me. I’ll attach two versions of my resume – 1 full-length, 1 condensed – along with my portfolio of “solutions”, and have it saved to an email.

Then I can just reply back to all the recruiters who contact me and send this packet along. And I won’t have to think about it each time. Practically automate it. Or maybe I will set up another email address that has an “autoresponder” on it, that automatically delivers my package for me. And I can tell all the recruiters to go there, instead of contacting me at my main email.

Yes! That’s what I’ll do. That will make things a whole lot easier, so I don’t have to manually send out a new resume all the time. What a pain in the a$$ that is. And I need to update my resume on all the job boards to use that new email. It will simplify things considerably, I believe… save me from having to go back to my home computer after a long day at the office.

Sometimes, the last thing I want to do, is network after a long day. Or a long week. Or whenever.

….

Okay, I got that set up, and now I don’t have to worry about “stuff”. And I don’t have to get into digging up past copies of my resume, every time someone reaches out to me. That’s such a pain in the neck.

Anyway, yes, my day has gotten off to a good start. And now it’s time to wash up my breakfast dishes and go for a walk in the woods.

To my 24 new followers – welcome

Welcome, all! I'm glad you're here.

Welcome, all! I’m glad you’re here.

I have been looking at my WordPress stats, following up on who has recently followed this blog.

In the last 2 weeks, 24 of you have joined me on this journey (22 via WordPress, 2 via email), so welcome. I don’t mean to be rude or take you for granted — please know that I appreciate you following, and I hope I bring something positive to your life.

I’m about to go out for my morning walk on an amazingly beautiful day, and before I do, I just want to say:

Whatever brought you to this blog, was probably for a very good reason. People come here all the time, not knowing what they will find, then they discover something that helps them. It’s both by accident, and by design. I don’t have any particular “content strategy” in mind, other than writing about the things that matter to me, as a TBI survivor dealing with an invisible set of difficulties, a regular person trying to build the best life possible, and as a member of the larger community who is sure that I’m not the only one who feels this way.

There are times when I am annoying, I whine and bitch and complain and am not my best self by any stretch of the imagination. I can be petulant and cranky and self-absorbed, and I can be a real trial at times — especially to myself ;)

Be that as it may, I have an incredible amount of goodness in my life, and I want to share that experience, as well as show others how I’ve gotten there through a combination of hard work and perseverance, and using my noggin to determine if what I’m doing is actually working. The times when I fail are the biggest lessons — and at times the most valuable.

I’m not afraid to fail. I just get a little tired of getting back up all the time.

But then, don’t we all…?

I know I am not alone in my frustrations and challenges. I’m human, and whether you’re dealing with a brain injury, another sort of injury, past trauma, ongoing difficulties in your life, or a hidden condition that others can never suspect is going on, we are all in this together, and we all have so much to share, if we take the time and put forth the effort.

The effort is not easy. But it is worth it. I start most of my days on this blog, because I remember all too well what it’s like to go through life in pain and frustration and despair, and feel so terribly alone. Some days I’d rather be doing something else than typing into a machine, and I can go for days without writing a word. But I know this is important — to me as well as others who find their way here and really value hearing someone else talk about life in ways that they can relate to.

That happens all too seldom. But I hope it won’t happen here.

Joining us today from...

Joining us today from…

So, to all of you — followers, as well as new readers from all over the world — thank you for your support. I’m happy you’re here.

 

 

 

Getting off coffee — After the migraine subsides

So, this is interesting. I did something to my system over the weekend, and I came down with a horrific migraine yesterday afternoon. It was the worst one I’ve had in quite some time. I’ve had some of those where you go blind in one eye and the world is spinning and you feel like you’re going to throw up, but I don’t remember the headache and weird feeling and light sensitivity ever being as bad as they were yesterday.

Holy crap.

I really didn’t expect it at all. My weekend was going really well. I was cutting back on the coffee and eating a more substantial breakfast of oatmeal and fruit, along with more fruits and vegetables throughout the day, getting more exercise (I rode the bike a long while on Saturday and Sunday and went for multiple hikes in the woods, up to the top of a nearby hill in our local conservation area), and drinking more water. I felt fantastic, with a lot of energy. I also got some roasted dandelion root tea, to try out as a substitute for coffee. I drank some on Saturday afternoon. It was nothing to write home about, and certainly not a reliable substitute for coffee. But it was worth a try. It was in the coffee aisle at the grocery store, after all.

But I woke up to a screaming migraine after my nap on Sunday afternoon. Couldn’t stand the light, head throbbing, sick to my stomach, feeling dull and drugged. Usually my headaches are just there, but this one was intrusive. Holy crap, whenever I moved, it just thrashed me. Up around an 8.5 – 9 on a scale of 1 – 10. I had a bunch of things I wanted to do on Sunday afternoon, but all I could do was sit in a dark room with my sunglasses on, soaking my feet in a hot mustard bath.

I had half a cup of coffee, ate a banana and a piece of chocolate, took a couple of Advil, and drank water (how’s that for performance enhancement?) and I started to feel better. Not as sensitive to light and not as sick. Still not great, but better than I had been. You do what you have to do.

I suspect this was partly about cutting back on coffee… increasing my exercise… changing my diet… and drinking that tea. All that change was abrupt, even if it was in a positive direction. I have a tendency to overdo things out of enthusiasm, and I think this was one of those times. I’m nervous about the MRI, and my anxiety is really rising. So, to calm myself down, I do things that give me the sense that I have some control over my life — changing my diet, exercising, trying new foods, cutting out coffee.

I’ve done some reading over the weekend about migraines, and they can be triggered by a bunch of things, including changes to diet and activity – check, and check. I know that exercise tends to start a headache with me, and I did start to get a bit of an ache while I was riding the bike — both days. But it’s usually just a headache, not the nausea, crazy feeling, and intense sensitivity to light that had me walking around the house with all the curtains drawn and wearing my sunglasses because even through the curtains, the light was too bright.

So, I did a number of things differently than usual, and I learned my lesson. I need to take things slowly — gradually — not dive in head-first, as I tend to do. Impulsiveness plus anxiety equals — surprise!

And not a good surprise, either. Right now, I’m fighting back more throbbing pain, keeping the blinds drawn, and reaching for the Advil. I don’t want to take the Imitrex, because I don’t know what it will do to me, and I have to be “on” this morning.

So, I need to take things easy and make change gradually. Not bombard my system like it’s a machine. As much as I like the idea of roasted dandelion root tea as an alternative for coffee, I don’t think it’s going to do it for me. I think it really contributed to the migraine. After the pain subsided to a relatively simple headache of “4” on a scale of “10”, I tried to drink it again yesterday evening. And the headache started up again. So, even if it’s not the sole contributor, it did not make things better for me. Dandelion is a natural diuretic, and it has other properties, too, that are used as home remedies.  I got some to get ready for my MRI on Wednesday, so I can flush out my system and not be poisoned (too much) by the contrast agent. But I just can’t do it.

Well, better I learn now, than later. That’s for sure. I’d rather get this lesson out of the way ahead of time, while I have the time to rest and recuperate. I have a busy day on Thursday, so I need to not get knocked out by the MRI on Wednesday. Most people don’t have problems with it, and they look at me like I have two heads when I tell them I get sick afterwards, but so what? I know what happens to me, and I need to get ready.

So, it’s plain water and healthy foods for me, thank you very much.

Onward.

New book posted “The Deepest Day”

deepest-day-cover-title

Click the image to go to the table of contents

So, I’ve finally posted the book I’ve been working on since about 2009.  The Deepest Day is an account of what it’s like to go through a day with extreme sensory issues. In some ways, it’s a work in progress, and I may make some updates in the future (and put it out in eBook format or publish it in print via Amazon CreateSpace), but for now it’s here on my site.

You can see it on the top navigation links.

I hope it does some good. I’m just happy to put it out there, and move on to my other projects which have been waiting in the wings. A famous writer whose name escapes me once said, “You never finish writing a book — you abandon it.”

And there we have it.

Onward.

Getting off coffee – as quickly as I can

Say it isn’t so

So, my new neuro encouraged me to get off coffee to help my migraines.

Oh, great wailing and gnashing of teeth!!! How can anyone expect me to do away with coffee?! It’s ridiculous. Why would I do away with my last real vice (aside from super-dark chocolate)? It’s the only thing that helps my mood and thinking when I’m dragging — which is a lot — generally within 4 hours of waking up and living my full-tilt-boogie life.

I scoffed at the very thought of it. Give up coffee. Yeah, right. Not gonna happen.

Why would anyone ask me to do such a thing — especially for headaches? I always thought that caffeine helped headaches, since so many headache medicines (including “Migraine formula” versions) have caffeine in them.But apparently, it’s the other way around. It doesn’t help. It hurts.

Here’s how I understand things now, based on what I’ve learned in the past 48 hours.

I found an article over at Lifehacker.com What Caffeine Actually Does to Your Brain and it was kind of sobering for me.

I’ll quote from the article:

Right off the bat, it’s worth stating again: the human brain, and caffeine, are nowhere near totally understood and easily explained by modern science. That said, there is a consensus on how a compound found all over nature, caffeine, affects the mind.

What Caffeine Actually Does to Your Brain

Every moment that you’re awake, the neurons in your brain are firing away. As those neurons fire, they produce adenosine as a byproduct, but adenosine is far from excrement. Your nervous system is actively monitoring adenosine levels through receptors. Normally, when adenosine levels reach a certain point in your brain and spinal cord, your body will start nudging you toward sleep, or at least taking it easy. There are actually a few different adenosine receptors throughout the body, but the one caffeine seems to interact with most directly is the A1 receptor. More on that later.

What Caffeine Actually Does to Your Brain

Enter caffeine. It occurs in all kinds of plants, and chemical relatives of caffeine are found in your own body. But taken in substantial amounts—the semi-standard 100mg that comes from a strong eight-ounce coffee, for instance—it functions as a supremely talented adenosine impersonator. It heads right for the adenosine receptors in your system and, because of its similarities to adenosine, it’s accepted by your body as the real thing and gets into the receptors.

Update: Commenter dangermou5e reminds us of web comic The Oatmeal’s take on adenosine and caffeine. It’s concise:

What Caffeine Actually Does to Your Brain

What Caffeine Actually Does to Your Brain

More important than just fitting in, though, caffeine actually binds to those receptors in efficient fashion, but doesn’t activate them—they’re plugged up by caffeine’s unique shape and chemical makeup. With those receptors blocked, the brain’s own stimulants, dopamine and glutamate, can do their work more freely—”Like taking the chaperones out of a high school dance,” Braun writes in an email. In the book, he ultimately likens caffeine’s powers to “putting a block of wood under one of the brain’s primary brake pedals.”

It’s an apt metaphor, because it spells out that caffeine very clearly doesn’t press the “gas” on your brain, and that it only blocks a “primary” brake. There are other compounds and receptors that have an effect on what your energy levels feel like—GABA, for example—but caffeine is a crude way of preventing your brain from bringing things to a halt.

So, basically, it’s keeping my body from putting the brakes on, disguising fatigue from the receptors that are built to realize when there’s a bunch of adenosine in my system.

That can’t be good, if I’m running out of steam and genuinely need to rest. Basically, it sounds like caffeine is tricking my body into picking up speed, when it should be doing just the opposite.

I kept reading… and when I Googled “coffee neurotoxin”, I came across this article: Coffee, caffeine, performance and you.

I quote again:

Caffeine is neurotoxin alkaloid. It stops insects eating plants. It works by being a very similar shape to adenosine, a nucleotide which is very important in energy transfer and neurotransmission. Adenosine inhibits nerve firing because it prevents the release of excitatory neurochemicals such as serotonin and acetylcholine.

The structure of caffeine as elucidated by Hermann Emil Fischer.

Caffeine settles into the adenosine receptors in the surface of neurons and in doing so, prevents adenosine itself from getting in there. Therefore no receptor activation can occur and the effect is just the opposite. With no adenosine in place to tranquilise the nerve, excitory neurochemicals will be released. Blood vessels constrict in your head and neck, the rate of nerve firing increases, your blood pressure and heart rate may rise and you experience a renewed interest and vigour when it comes to your Excel document.

Your higher cognitive function is now improved. Even what you can see is enhanced. The stimulation of nerves which use acetylcholine to send their messages affects a variety of areas in the body and brain. The visual cortex is one such area and drinking coffee causes an enhancement in our ability to process the shape, colour and location of visual objects.

 So, here’s this neurotoxin getting into my system, pumping me up and cranking out those neurochemicals. It might not seem like such a bad thing, but I’ve also heard that part of the excitory activity actually comes from the body’s defense response to a perceived threat from the caffeine, which some have called a natural pesticide. So, my system is getting a dose of pesticide and going into fight-flight mode to defend itself from this threat I’m introducing on purpose, which then makes me feel like I’m doing better, when it’s really the adrenaline that’s coursing through my veins that’s telling me that.

I don’t actually become better. I just feel like I am.

So, here’s what I take from this whole little 48-hour research investigation of mine:

Caffeine is bad stuff — especially if you have issues with fatigue and TBI. I mean, seriously, when I’m fatigued, I need to rest and recuperate, not push myself through like I always do. That fries my system and makes sure I’m in a persistent state of fight-flight. I know for a fact that that’s no good — it makes it difficult to learn and use higher cognitive functions. And the longer and more intensely I use caffeine, the more I’m stressing my system and whacking it out and jeopardizing my recovery.

In TBI recovery, you need to rebuild connections in your brain and re-learn things your system has (in)conveniently forgotten. Fight-flight marination in adrenaline impairs learning. So, if TBI recovery is dependent on learning, then coffee, tea, caffeine, even chocolate, are all a threat to my successful progress.

I had no idea.

It would have helped, had my neuro actually explained all this to me in a way I could understand. But it really took a passionate raw-food vegetarian fruitarian Australian dude living(?) in Thailand to make it clear. Here’s his expose that started turning things around for me:

Anyway, there it is. More to come on this, but for now,  it’s time to seriously cut out the caffeine.

 

So, my neuropsych HAS been listening…

Okay, so, since 2008, I’ve been seeing a neuropsych for my TBI issues, and for years, it’s felt like they had no idea what I was actually talking about. I couldn’t detect a response from them or much indication that what I was telling them was actually sinking in.

Reading their summary report to my neuro, it’s clear that I’ve been wrong about that. They have been listening, and it’s a pretty moving experience to realize that some of the limitations have been on the side of my perceptions.

They’ve been listening and getting what’s going on with me.

I just didn’t realize it. All along, I’ve been missing that piece. Oh, well. At least I’ve haven’t been erring on the side of unjustified faith. Thinking that my neuropsych has been listening, while they haven’t heard much at all, would be far worse.

So, this is good. It’s a good place to be right now. There is a chance that my insurance will no longer cover these sessions, after the end of this year, so I may be looking at another six months with them, tops.

That will make me very sad. But life must go on.

My head is all in a whirl over this realization. Time to go for a long walk in the woods.

Gearing up to read my neuropsych’s latest report

Hmmm… let’s see what’s in there

So, back in 2012-2013 I had a second neuropsychological assessment done to follow up and see where I was. It’s taken about a year and a half for my neuropsych to actually compile the results. Kind of blows my mind that it takes that long to light a fire under someone, but according to another neuropsychologist I met, that kind of delay is common.

You have to keep pestering people for the results. I had been doing that, but it wasn’t until I lined up this new neuro (who actually knows my neuropsych) that my neuropsych got it in gear and started making some serious progress.

Now I actually have a report sitting on the desk beside me, ready to read. I’m having some breakfast (after my morning workout) before I dig in.

I can’t believe it’s the weekend. I’m starting to feel some relief with the projects I’m on, because in a couple of months they’ll be behind me. And then I can transition to this new team structure they’re creating at work — more collaborative, more social, less division between all the different types of people assigned to projects. They’re putting us all together, which will be interesting. It will also keep me from isolating and avoiding people. And it will keep others on my team from doing the same. Techy people can be … well, strange. We can be very social, yet very private.

Should be interesting to see how that comes out.

I’ve got an interesting day ahead of me. I have some errands to run, but overall, my required activities are limited. My spouse is going away on a business trip next weekend, so we have to do some prep for that. Getting all their supplies together and whatnot.

And I have an interesting week ahead of me, too. I’m getting my MRI on Wednesday morning, to check my brain — especially my cerebellum. I’m doing some research on gadolinium, the contrast agent they’ll be using. The info on gadolinium isn’t great, so I’ve stopped reading it, and I’m concentrating instead on how to detox afterwards. I found some lists of foods I can eat to help my kidneys — lemon juice in water, blueberries, cranberries, grapes, turmeric, watermelon, parsley, dandelion tea. I’m starting to work with my body now, so I’m prepped and ready for Wednesday.

No sense in worrying about it — I don’t have any kidney problems (my bloodwork has always come back looking good), so my strategy is to just beef up my system ahead of time, and take extra care afterwards. A lot of the foods I’m already eating, plus using baking soda (I put a1/2 teaspoon in a big glass of water and drink it most mornings). So, I have a plan.

The week after, I have a visit with a physiatrist, who was recommended so I can check out my neck problems, and the tingling and tics that’s been going on with my face and hands. I know I screwed up my C6 and C7 nerves over the winter — not enough regular exercise — too much irregular exercise. Plus, I’ve hurt my neck a bunch of times in car accidents and other falls. So, maybe they can figure some things out.  At least check me out and see if they can find anything out of the ordinary.

I need to collect some notes for them — descriptions of my symptoms, when they started, history of accidents, etc. I’ll give them an infographic. That will probably do the trick. That’s a good idea. Then I won’t have to explain everything in words.

Anyway, back to this report. According to my neuropsych, I made amazing progress over the time between the two assessments. Phenomenal. I would have to concur. A lot of it has had to do with keeping this blog, tracking my experiences, and also making lifestyle changes with diet and exercise. Now it will be interesting to see what they have to say — which they think is important for my neuro to know.

It will be interesting to see what they’re focused on.

Time to break out the report, cozy up to my cup of hot neurotoxins, and see what’s what.

More later

Onward.

Neuro visit notes – so I don’t forget

So cool… MRIs rock!

So, I had a visit with my new neurologist, and we had a lot to cover. We didn’t have enough time to cover everything — obviously. But I think we made a good start. If this is going to be an ongoing medical relationship, then there will be plenty of more opportunity to discuss and trade information and work out how to deal with the things that need dealing with.

And how to figure out which things actually need dealing with, versus just being annoying little irritations that are inconveniences, first and foremost.

I need to get off on the right foot. And now that my regular PCP is probably out of the picture — I was told they were out for a medical issue, a few months back, and now I got a call from their office telling me I need to reschedule the physical that was scheduled for tomorrow. So, I think they might be sick. They haven’t been happy at that practice for years, and I think it just caught up with them.

I really liked that doctor — at the start. They were personable and treated me like a real person. They got lax at the end and didn’t follow through with me on test results, but I still liked them. Then again, it’s probably been time for me to find another PCP for some time. I need someone who’s actually engaged and can deal with me for the person I am. I’m not sure how I’m going to manage this, because I live about an hour away from decent hospitals, so what am I supposed to do if I come down with something or I just need to see them about something?

But I’m getting sidetracked. Back to the neurologist.

I took a list of my biggest symptoms and explanations of how they affect me, what makes them better, the severity of them, etc. My neuropsychologist had sent them an 8-page report on my history and status, and I gave them an additional 6 pages of my own information. I don’t know what my neuropsych sent to them, because they haven’t yet sent me a copy of the report, but they promised to, so…

The neuro was pretty personable, and I talked about the issues I’ve been having — the headaches that are keeping me from exercising… neck problems… the tremors in my right hand and thumb… the twitching in my left cheek. The tremors and twitching are pretty clearly “essential tremor” which is triggered by fatigue and adrenaline — check… and check. I’m usually fatigued, and I’m often adrenalized, especially when I have to keep going from being so tired. The two go hand-in-hand, and now that I understand that, I can take that off my “worry list”.

We talked about my balance issues — dysautonomia, and how it might have something to do with it. I need to look that up. It’s about the autonomic nervous system being out of whack, thanks to — sometimes — a clunk on the head. Considering I’ve gotten a bunch of concussions, I wouldn’t be surprised.

The neuro seemed quite concerned about the dysautonomia thing, and they suggested some tests. I’m really not up for that, just yet. First, the MRI and seeing a physiatrist.

So yeah, another MRI is in order. They want to check the nerves in my neck and cerebellum, as I recall (I think). They took a quick look at my imaging from 2009 (I took the CD with me and they reviewed it — with gusto), and they said my brain looks great(!). With the new headache issues emerging just within the past 18 months or so, they want to have another look.

And there’s that pineal cyst that nobody thinks is a big deal at all, but is worth checking on. As I recall, the size of it is not huge, but it’s also not tiny — it’s 4mm I think (I’ll have to check that), which is the size where people start to take notice. Originally I was told to have an MRI every 2 years to take a look at it and see if anything has changed. Getting contrast agent pumped into me every couple of years is not my idea of a good time — it makes me sick for a few days afterwards — and considering that 40% of the population is walking around with them, I really don’t feel the need to get tested that often.

But it will be interesting to see how my brain is doing, these days.

It will be really interesting to compare to my MRI from 7 years ago, and see how things are going. Maybe things are changing. I’m pretty sure they are. I suspect there’s a lot that’s changed for the better, actually. 2009 was near the beginning of my active recovery, and I’ve made incredible progress since then, so I’d like to see if there’s been a physical change to my brain — in gray matter or white matter or anything else. Then again, maybe nothing has changed. Or maybe things have gotten worse. Whatever. Whether or not it shows in the MRI, my life has improved dramatically.

I will probably get MRIs every 7-10 years for the rest of my life (perhaps more frequently as I age), just to see how things are going “up there”. I have a pineal cyst, so I don’t need to argue with folks or come up with some fancy reason for justification. The neurologist who ordered the MRI in 2009 told me to get imaged every 2 years, so there it is.

Anyway, we also talked about x-rays — looking at my back and neck. I’ve been in a bunch of car accidents and falls where I hurt my neck, so who knows what the heck is going on with me?

We talked about the sensitivities, too… just a little bit, because there was a ton of material to cover. Something about light and noise sensitivities being connected with … something I can’t remember. Maybe balance issues? That’s something I’d like to know more about, from a medical standpoint. I do know that I get better — less sensitive — when I am well-rested (which is seldom, actually). But I’d like to know the underlying mechanisms that contribute to it, so I can take some constructive action.

It’s all about constructive action. I haven’t gotten a lot of medical help in my life.  Either the doctors have been idiots, or I haven’t done a good job of communicating. In the absence of competent medical help, I’ve just been going along with my life, living as best I can. I really needed help from a neuropsych to jumpstart my recovery, and having them to talk to each week has been a significant help. But I wonder if I really need their help in a neuropsychological capacity. It’s more for the sake of having someone to talk to who is just able to have a focused conversation with me without getting all weirded out by my tics and odd behavior.

People can be so unimaginative.

I’ll need to write more about my visit, so I don’t forget. I had a good recap with my neuropsych yesterday, and it’s going to be another week and a half, till we talk again, but that’s the best I can do for my scheduling.

I also need to write this down to recap for myself and get clear on my goals for care. I need to communicate to the neuro that I’m a “lifehacker” who first learns about the root causes of conditions and then crafts a personal approach to them that works for me and enables me to maintain a sense of autonomy and independence. If we end up working together over the long run, I need to level-set up front with expectations and such. Or that may not happen for the long run, because my great insurance will change at the end of this year, and I don’t know if I’ll be able to get adequate coverage to continue with either my neuropsych or neuro or both. So, I don’t have a lot of time to waste. Gotta make the most of it now, while I can.

Well, the day is waiting, and it’s time to get moving.

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.