Then, by Friday night, I realized that the recent re-org is potentially a really great thing. For me, anyway.
See, for the past three years, my boss has been pressuring me to do a job I don’t want to do, and I have no interest in doing. They’ve been urging me to be more socially pro-active and get out and drum up political support for the program I run. Go network. Hob-nob. Make my presence felt in the world.
I, on the other hand, really just want to get things done. Because no matter how much I politic and get people “in my corner”, if people aren’t doing the job right, none of it is going to pan out.
And, in fact, a bunch of things didn’t pan out over the past three years — partly because I was so divided in my attention that I missed things. Some things I missed so terribly, I was sure I was going to get fired. I didn’t, but the whole experience was pretty terrible.
Anyway, on Friday I was talking to a co-worker about the re-org, and it looks like that whole hob-nobbing, uber-politicking aspect of my position is going to get offloaded to other people. And that’s fine with me. I hate doing that. With a burning passion. And now it looks like I won’t have to do it, anymore.
So, lesson learned (yet again) : Don’t jump to conclusions about what stuff means or what’s “destined” to happen. Because it might not. And I don’t want to waste my energy, getting all freaked out about things that will never happen.
I need to save my energy.
Speaking of which, today’s a bonus day — cold and rainy and grey and quiet. A lot of people are out of town for the Memorial Day weekend. And I can move at my own pace. Tomorrow, too. Long weekend. Good thing. I’ve been needing this.
Yeah, it’s all good. It usually is, I just don’t always realize it.
Memorial Day weekend is just around the corner, and I can’t wait. Having three days off work — and tomorrow I’ll be working from home, just like everyone else who’s able to, who doesn’t want to get stuck in Friday afternoon holiday traffic.
It’s unfortunate that I feel this way. Once upon a time, I loved my work. I couldn’t wait to do it, each and every day. I didn’t like weekends, and I even worked on my skills on Saturdays and Sundays.
No more. The things I once loved to do are lost to me – ever since my TBI in 2004, the way my brain processes information changed, so I can’t do the level of coding I once did. I also get tired more quickly, so that keeps me from working long hours at it, as well.
Oh, well. I have other things in my life that brighten my day. And I’ll have three days to do them, this weekend. Work in my garden, work around the house, work in my yard. Lots of outdoor activities — providing the weather holds.
That, and catching up on reading, maybe doing some writing, and working on some projects I’ve recently revived.
I’ve got plenty to do. I’m just feeling a certain sense of loss over not counting my day-job as something I look forward to doing.
I sometimes dream of winning the lottery. But then I get depressed. So, I try not to do that, anymore.
I just keep going. Just keep going. Till I get where I’m supposed to go.
It’s going to be great, having the time to myself, this weekend. Time to think. Time to rest. Time to move at my own pace. Bliss. Sheer bliss.
But until then, it’s work-time. And I’m about to launch into that in another 25 minutes. Just enough time to get myself prepped for my first conference call.
Life has been a little too exciting for me, lately. Lots going on, lots to do, and not nearly enough time to recover from it all.
Work needs to be done on the house. So I’m doing it.
My yard needs tending. So I’m tending it.
My job is extremely demanding. So, I’m stepping up to meet the demands as best as I can.
My spouse is doing okay – one day good, the next not so good. So, I’m dealing with that.
My car has been making strange sounds. So I took it to the mechanic.
The loaner car they gave me is terrible. So, I’m driving the van instead.
It seems like each and every day, I’m presented with challenges. More of them now, than usual, it seems. Or maybe I’m just tired. Or maybe I’m just needing a break. It could be all of the above. But for now, since I have no other “escape plan” that’s possible right away, I’m dealing with everything.
The snow has all melted, and the rains have come, and now everyone’s yards are turning green.
I bought myself some grass seed and some moss killer, because my yard is getting way out of control with the mossy stuff. Grass needs to grow. So, it’s time to take action.
I’ve got some gardening to do, too. I bought flower seeds for the various flower beds around the house, and this weekend I’ll have some time to work on them. My spouse is away for four days, starting Thursday. So, as of Friday, I’ll have the place to myself (I’m helping out on Thursday, so it won’t be a day off for me).
Then I can get some work done. Make a racket. Make a mess. I’ll clean it all up, of course, but it’ll be good to just clunk around the house without worrying about bothering anyone else.
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.
A few more gleanings from my stats… here’s what people are searching for. Maybe I can provide some insights… I’ll try.
after concussion frontal felt like something split
Concussion is a tricky thing. It affects everyone differently, and this is one of the ways it can be sensed. For years after my last mild TBI, I felt like my brain was not communicating properly with itself. And that caused a huge amount of stress for me. I also have a friend who was dropped on their head as a baby. They have had a neuropsychological assessment, when they were told that the left side of their brain was not communicating properly with the right side, and they have a lot of trouble reading and comprehending. They also become angry and rigid very quickly, and it’s like you can actually seeing one side of them not sharing information freely with the other side. Interestingly, they refuse to acknowledge that their issues might be neurological. They are paranoid about the government spying on them, and they are convinced they’re being followed. They grew up in a traumatic environment, and they work in trauma counseling, and everything for them is about trauma. But not about neurology. I often think they could benefit from working with a rehabitative neuropsychologist, but they never want to talk about “brain stuff”.
But back to the stats — that feeling that something is not functioning properly is quite common after concussion / mild TBI. As a matter of fact, things are NOT functioning properly. Here’s a great graphic that shows what the deal is:
Basically, you’ve got a sudden increase in your brain’s demand for glucose, combined with a sudden decrease in the flow of blood – that’s a pretty significant mismatch, considering that blood is how the brain gets its energy. On top of that, you’ve got a lowered metabolic rate for oxygen — so just when the brain needs more energy to heal, it gets even less energy than it needs. It’s literally not able to function properly to produce the fuel it requires. And that can leave you feeling pretty fogged-up and messed up.
Another thing that can happen, is that your axons can be sheared and twisted. Depending on the injury, axons can be twisted like this:
That keeps the axons from communicating, and it can even kill them. So, you end up with a “Swiss-cheese” effect, where there are little tiny gaps in the connections in all the networks in your brain.
Or axons can get sheared like this:
And that literally disconnects them from themselves and from everything else.
Every brain injury is different. And everyone’s social situation is different. So, you have to just take it as it comes… and understand that A) it takes the brain a while to get back — sometimes several weeks, for it to clear out the gunk… and B) you can rebuild the connections in your brain — that’s what the brain does… constantly… and C) worry is going to make things worse, so just settle in, take good care of yourself, and keep an eye out for things that might get you injured again.
link between fibromyalgia and tbi
I’ve heard there may be a link between these. I’ve heard that there’s a link between PTSD and fibromaylgia. And there’s a link between TBI and PTSD. The three could very well go hand-in-hand.
I know a number of people with “fibro”, including one of my siblings, and they all have a history of trauma. Some of them have histories of car accidents. We’re still learning about fibromyalgia, but if I understand it correctly, it has to do with the brain sending off pain signals in specific parts of the body. Sometimes the signals are debilitating. And the whole deal can be exhausting. It’s a brain thing, so why wouldn’t it be potentially triggered by TBI?
One of my friends with “fibro” suggested (after I told them about my TBI experiences) that they might have had a TBI. Or two. Or three. They’d been rear-ended in traffic a number of times, and they were nearly disabled because of it. After all those years of telling me about their pain in a certain context, suddenly having the TBI information seemed to clarify a lot for them. I lost touch with them, when I moved away, years ago, so I have no idea if anything changed for them. I hope it did.
I’ve had chronic pain issues for many years, and even though I’ve been hypersensitive to touch since I was a little kid, the debilitating pain started in earnest after a car accident in 1987. Some folks have suggested I might have “fibro”. I’m not so sure. My pain is pretty much all over, and it can subside and abate for extended periods of time. It also responds well to exercise, which apparently “fibro” does not(?) Also, the crippling fatigue has gotten much, much better over time, and it fluctuates, so I think it’s more related to my mild TBIs than “fibro”. It’s a big old puzzle, that one. I hope they can figure things out before too terribly long.
advantages of bad memory
This is one of my favorite subjects, because it’s so close to home. I joke that “the secret to happiness is good health and a bad memory”, but my friends don’t think that’s funny. Too bad for them. I think it’s hilarious. My memory tends to be awful. I forget things I did earlier in the day, I forget what day it is, I forget where I put things, and I forget things I was supposed to do. I have a whole system built up to keep me on track and mitigate the problems of my spotty memory. It can really be a problem.
On the other hand, forgetting things that are weighing me down provides a much-needed break from the intensity of life. And it’s been very helpful for me to let old grudges and hurts slip away, as though they never happened. It frees me up to interact with people who may have said or done stupid things in a moment of carelessness or thoughtlessness. Often, they feel bad about it, afterwards, and they’re afraid I’ll hold a grudge.
But I’ve forgotten all about it. And that’s a good thing. It lets us get on with our lives like normal people, instead of a bundle of grudges rolling around, bumping into everyone else’s grudges.
I’ve had three of these. No, four. (That memory thing again 😉
I’ve had 2 of them with contrast and 2 without. I’ve gotten sick after 2 of the 4 — but not every time I had contrast. I don’t care for contrast — gadolinium is a heavy metal that has been connected with serious health issues, and I don’t like the feeling of it going into my veins. It makes me feel weird. Uncomfortable.
I have had a DTI MRI, which was interesting, but it didn’t show nearly as much as I was hoping. Part of that is due to the radiologist. They were doing the bare minimum on the job, and they were probably reading a ton of images, so there was no time to dwell on my own case. I’ve gotten some software that will supposedly let me see my own DTI tractography, but I have yet to learn how to use it. Eventually, I will. Just not today.
Anyway, that’s it for today.
I’m working from home today — I had a busy weekend, and I’m still wiped out. I have no meetings in the office today, and I think a lot of other folks will be working remotely, as the weather is terrible, and schools may be either delayed or closed. So, I’m taking the space and just kicking back to do my work in peace.
I just confirmed my neuro follow-up appointment for tomorrow. I had gotten a call from them on Saturday, confirming me for 10:20 a.m. tomorrow morning, but I could have sworn I made it for 2:20 p.m.
So, I called them back this morning, and yes, it is at 2:20 p.m.
2:20 on the 22nd of the month. Gotta play those numbers 🙂
Anyway, after that appointment I’m also meeting with my new neuropsych. I did a little research on them over the weekend, and it turns out that they’re about 15 years younger than I (they got their B.A. in 2001 – which is really hard to believe… but there it is). They’ve had their Ph.D. less than 10 years, and they’ve been primarily engaged in group practice work, in an academic lab, so this whole individual thing may be new to them. I know they have worked directly with a variety of different kinds of folks (and they did their obligatory VA training), so it will be interesting seeing how this goes.
I have high hopes.
In any case, it will be great to be getting back to seeing someone on Tuesday evenings. Neuro rehab is really the central organizing theme of my life — improving myself, better understanding my brain, organizing my thoughts, and also figuring out how to deal with my spouse as they decline… it’s all part of it. And it helps to have a working relationship with someone who is a professional — no personal strings attached, no implied reciprocity, no emotional entanglements… just someone to talk things through with, who has an expert outlook on it all.
So, I’m gathering my thoughts for tomorrow. I need to take my bloodwork numbers from the past years, so they have something to compare to, and I need to collect my questions about my MRI images.
There’s a lot there I’d like explained. And this neuro is the only person I know who can explain it for me.
So, tomorrow is a new day. Literally. And it feels pretty danged good to be starting something fresh.
So, I got my MRI pictures back – including the DTI. This is my latest thing – looking through the pictures to see what I can see, and also compare my brain to how it was back in 2009, when I had my first MRI (for the seizure-like experiences).
I have yet to find out what they all mean, but one of my nagging concerns has subsided. I was worried that they would not find anything to explain my dizziness and other symptoms. But apparently, there are some ROIs (regions of interest) on my pictures (they are outlined in the picture above), and there are some apparent differences between the two sides of my brain.
Overall, the radiologist’s report came back looking quite good. At least, as far as I can tell… who knows what it really means? I’ll find out next Tuesday — less than a week, now — when I meet with them again and they have all my data in hand and have done the analysis.
The other thing I’m digging into is the DTI tractography, where you can see the actual connections between the different parts of the brain. I need a better viewer, because the one I have is 2D. I need a 3D viewer. But to do that, I need to have a more powerful computer, because this old clunker is still running Windows XP, from 2002. So, it’s time for an upgrade. It’s stood me in good stead, but it’s no good for doing modern work — like properly sized videos, as well as complex 3D rendering.
The new 3D viewers available today (some of them are actually free) are pretty amazing. If you have a modern computer (with Windows 7, at least, or possibly a Mac), you can see some amazing things. For free. There are also datasets you can download to view and play with. I have done a little bit of that, but again, my computer hasn’t been strong enough to keep up.
So, I went on eBay and found myself a better computer — for a fraction of what it would normally cost. I know what to look for, and I know how to select the stuff that will serve me best, so I can get a really great deal. This computer has lasted nearly 10 years, and it cost me a little over $200, so I’d say it’s been a good value.
I hope the same is true of the next one I get.
Anyway, I’ll be researching DTI MRIs as my new hobby. Radiology has always fascinated me, and the 3D technologies we have now are nothing short of amazing. It’s a great way to pass the time — you learn a lot, and it’s all very real stuff.
Okay, I know MRIs are just magnetic. You’re not getting zapped with a bunch of radiation, like with X-rays and PET scans. It’s just high-powered magnets flying around you.
But after two MRIs in the space of three days, I feel like crap.
The MRI place called me back, because the doctor ordered another type of image, so back I went, yesterday afternoon, through Friday afternoon traffic. Apparently, everyone was fleeing work early, because the traffic was terrible. And the MRI place is off in West Bumblef*ck, so it took a while to get there. This cut into time I really needed to spend on a couple of my projects at work, which I wanted to get done before the day was up. I ended up waiting around for nearly an hour, before they finally got me in (I’d thought if I got there earlier in the day, they’d finish up with me early – ’twas not to be.)
Anyway, they just needed to get a couple of images, which took all of15 minutes, tops. So, that wasn’t bad. I was able to hold still, and they said the images looked good. That was a relief. I tend to twitch and have tremors, which can screw things up. They put foam wedges in beside my head, so it would be propped in place, so I don’t think I moved at all.
Compared to the waiting, the MRI was the easy part. And the wait was easy, compared to my drive home.
I had a 90-minute trip through evening rush hour traffic, and it was interminable. I did manage to find some music to keep me going, but it was pretty rough. And I started to feel pretty sick after about 20 minutes in the car. I was aching all over, feeling hot and fevered, and my stomach was hurting me. I’ve gotten sick after MRIs before, but I assumed it was the gadolinium – the contrast agent. Yesterday, though, I was feeling pretty rough. I made it home safely, and promptly took a shower and went to bed.
I took my temperature a couple of times — 99.3, 99.4, 100.4 before my nap. After I woke up, I checked again, and it was 99.4, which was a 1 degree improvement. Then I lay in bed and surfed the web on my tablet for a while. I try to avoid doing that as much as possible. It’s bad sleep hygiene to look at devices in bed, and it totally messes up my sleeping schedule after a while, but I just couldn’t get up. I felt like I’d been run over — completely wiped out.
After another hour, I checked my temperature again, and it was normal – 98.6. I still wasn’t feeling great, but I went out and picked up some take-out food, so I didn’t have to cook. I got in bed before 11:00, and when I checked my temperature, it was 96.5, which is normal for me.
Today, my fever is gone, but every cell in my body hurts. I feel like I have the flu – without the chills and fever. My head is throbbing in a different way than normal. I don’t know how to describe it. It’s like a low-level pulsing all through it. Usually, my headaches are localized to the front of my skull, but this is an all-over headache.
And my body is just in pain. Everything hurts. When I move. When I hold still. When I sit. When I stand. And it hurts all through.
My stomach is upset, and I’m having gastrointestinal distress. This time, I had no contrast agent, so I’m not sure why my system is acting up, but it is. I felt pretty good after the first MRI – no noticeable side-effects, that I could tell. But today, I’m really feeling it.
I supposed it might have helped, if I’d waited longer between the scans. Even though it’s just magnets, it’s still sending something through your body – waves or whatever. And if MRI were 100% benign, there wouldn’t be all those warning signs around the center. They have different zones, I assume to indicate different levels of exposure to whatever is in the airwaves, so there must be something about it that urges caution.
Now what do I do? I wasn’t able to sleep past 4 a.m. I just lay in bed and listened to the owls hooting in the woods behind my house. I got up about 5 and did a little exercise, got my breakfast, and started my day as I normally do. I just need to get my body back on schedule, get it normalized, and make sure I get plenty of rest this weekend.
It’s light outside, now, so I’ll go for a walk in the woods. That’s always good for what ails me. And if I don’t feel great, I’ll just come home and go back to bed. I just need to get back to normal, and get my body feeling human again.
I just hope they find something useful. Because if they don’t, that’s two days lost — no, three, counting today.
I hope it will be worth it, and I’ll get some DTI results back that show something that my doctors can use. Here’s hoping.