When more stuff falls apart

1923 broken down car with wheel off
Sometimes, a wheel just comes off

I’m back.

But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.

So, I help out.

I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.

And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.

But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.

I slow things down, too. The fatigue is just crushing, at times, and when I  push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.

On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.

I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.

We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.

Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.

On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.

And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.

But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.

And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.

It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.

It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.

This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.

It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that in TBI S.O.S.Self Matters To Others. Who people know us to be, is also a big part of who they understand themselves to be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.

Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.

I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.

As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.

Sometimes the wheels come off. And you just have to figure out how to deal.

Onward.

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The Busy-Not-Busy Balancing Act

hand holding pen, checking off lists on a checklist
Getting stuff done… one thing at a time.

It’s been a little while since I last blogged here. I’ve actually been increasingly busy at work. No sooner do I start to think, “I’m out of here…” than I get a handful of projects handed to me that are actually really good for my resume. So, I’ll be around long enough to finish them up. Possibly longer. As long as the job is serving my purposes with keeping my skills sharp and my record clean, I’ll keep it.

No need to bolt. Not just yet. Of course, with the merger happening before year-end, anything could happen, but I’m not racing off… not quite yet.

It’s eerie, though, how the more I intended to leave, the more my boss started to “loop me in” to more projects with high visibility. Some days it seems like they’re reading my mind. How do they do that, anyway?

Well, whatever. I’ve been more busy at work, and I’ve been organizing at home. So, I’ve had less time to blog here.

The whole pace of my past six months has been a little strange. It’s either feast or famine. I’m either slammed with a million different things to do, or I’m in a lull, feeling like I’m twiddling my thumbs (sometimes I literally am). Of course, then I feel the need to jump into action and come up with more things to do, so I get myself busy again… and then when the normal incoming tide of to-do items starts to rise again, I have twice as much to handle.

Funny, how that goes.

Well, it’s better than not having anything going on, I suppose. I’m not sure I could have nothing going on, anyway.

It’s really about balance. And also doing a better job of tracking what I’m really working on. Sometimes, when I am “not busy”, I really should be — I’m just forgetting that I’ve got stuff simmering on the back-burner. Or I’ve flat-out forgotten that I’m supposed to be doing something important. Then I scramble to get it together, and I don’t always do a great job of it.

I can’t beat myself up over it, though. I just have to keep steady, and also do a better job of tracking my activities. I’ve started keeping weekly logs of what needs to be done, what I did in the past week, what I need to do next week. I’ve tried a bunch of different systems, but for some reason, they have all bugged the crap out of me. I think this one is good, though. So far, so good.

And I’m reviewing my lists with my neuropsych, which is helpful. I haven’t done this before, because I was embarrassed that I was really struggling. I didn’t feel like I should be, and my old neuropsych was very intent on making sure I didn’t get bogged down in a lot of negative self-talk. So, rather than admit when I was having trouble, I just didn’t talk about it. And I let a lot of stuff slip through the cracks.

No more, though. No more of that. I want to do well. I want to do my best. Even if that means getting over my self-consciousness and sense of impending failure.

It’s all a balancing act — an act of balance. A deliberate choice to balance things out, and a conscious act to do just that.

Yep. For me, it’s a choice.

Onward… together with the help I can find.

No exercise, no waking up

rain-on-leavesI didn’t feel like exercising this morning. I just lay in bed and pulled back the curtains… watched the gentle rain fall and listened to it pinging on the chimney cap outside my window. It’s a beautiful day to stay indoors and just chill out… reading, thinking, blogging… just chillin’.

If only.

But if I don’t get up and get my circulation pumping — get on that bike and ride — I’m no good for the rest of the day. I bypassed my morning ride, and I was dragging all day. And that was no good.

So, after I lay there a little while, I got myself out of bed and went for my ride. I’m not sure how long I rode. It was at least 20 minutes, I think. Nothing huge, just enough to wake me up and work up a bit of a sweat. Then I had my big glass of water and made my breakfast. I didn’t lift this morning, because I’ve been lifting and carrying heavy objects for days, now, and my body needs a rest. As much as I’d like to have that morning “pump”, common sense prevails.

I know how unproductive it is, when I overtrain and overdo it, so I’ll use my good sense and not do that today.

Yesterday, I swam again. It’s good. I only swam once last week, in the pool at work. I managed to get in a friend’s pool over the weekend and have a little bit of a swim on Sunday, but it was no workout. Just a cooling-off, really.

When I swim at work, it’s a whole different thing. I go around noontime, when everyone is either eating lunch, or they’re in the gym. I usually have the place to myself, but yesterday there was someone else there. I like to swim hard from one end of the Olympic sized pool to the other, then float on my back and relax, letting my heart rate and breathing go back to normal. It’s probably the most relaxing thing in my day, to just lie there and float… weightless, feeling myself floating free… The other person in the pool looked at me strangely, and I wonder if maybe they thought there was something wrong. But after my heart rate and breathing were back to normal, I went back to swimming… and they jumped out of the pool and went back to their work day.

I’m going to see the neurologist again today, to look at test results. I think this whole thing has been a boondoggle, quite frankly. But I had to follow up on it, because it would be remiss for me to overlook a serious problem that could impact myself and my spouse, on down the line. I’m the sole $upport for us, so I have to take care of myself and do my due diligence wherever possible. I don’t like it, but it’s gotta get done.

So, I’m doing it. I’m not sure what’s going to come out of this. I’m tempted to just bag it and say, “Okay, I have these issues, and you’ve been unable to medically find anything significant to address. I know they’re issues for me, and I need to manage them, so since you’ve got nothing to offer me, I’ll take it from here.”

The medical establishment doesn’t have the nuance and sophistication for people like me, so I’m not going to waste any more of their (and my time) with requests for help that they’re unprepared and unable to give.

Time to just take things into my own hands, and be done with it. I’ve given it my best shot, but it’s time to call an end to this search.

It’s taking up way too much time and energy, and I just don’t have the time and resources to keep chasing this the way I have. Anyway, I’m really just following this up because of advice from my neuropsych(s). I would have just left it alone and dealt with it, myself, but they’ve been so keen on me figuring out the medical piece of this, so I don’t fall.

The crazy thing is, months ago (and before I spent lots of time and a bit of money on this), I could have predicted this outcome. But then, I’m the brain-injured one, so what do I know?

Well, maybe today will see the end to this. If I ever get concussed or brain-injured again, I know where to find these people. But until then (and hopefully that never happens), I’m just going to get back to my life. It’s been interesting, but it hasn’t been that productive.

And frankly, exercise and a good diet, getting rest, keeping active in my life, and really diving into my life experience to learn as much as I can, is turning out to be the ticket to my ongoing recovery.

That’s just fine with me.

Onward!

Heavier weights today

this is waht today feels like
This is what today feels like

Not every day starts out with 9.5 hours of sleep, unfortunately. In fact, precious few do. And after days of sleeping long past 8 hours, I’m up early this morning with barely 7 hours under my belt. I was too warm, overnight, and I probably need to put the air conditioner back in the window, because when I get too warm, I can’t sleep.

Also, I was having bad dreams last night, having to do with my spouse. I was so angry with them about doing something wrong, and I was trying to get back at them and teach them a lesson, but when they tried to step up and do what I needed them to do, they couldn’t, because their mind was gone. It was mean-spirited and cruel, and it also brought home to me, yet again, just how much it sucks to have your beloved decline right before your very eyes.

So, no, I didn’t get enough sleep last night.

I got up anyway and started in on my day. I rode the exercise bike for 20 minutes, then I did some heavier lifting than I usually do. I didn’t do a ton of it, because I don’t want to injure myself. But I did lift heavier weights that took more concentration and effort than usual. And that felt pretty good. It felt good to push, even if it was just a slight bit more than usual.

I need to shake things up and break up my routine, so it doesn’t get boring and I don’t lose interest and motivation. I mean, having a “master routine” of doing the same activities each morning and evening (getting to bed at the same time, exercising and eating a nutritious breakfast in the morning, and keeping myself on a schedule). But doing the exact same thing(s) over and over can be mind-numbing, so I need to find other ways to work and stay active.

And that’s what I’m doing. I had my “magic potion” of electrolytes and fruit juice this morning. And I also mixed up a big batch of deviled eggs. I actually love them. And over the last holiday season, my sister-in-law showed me some secrets of making really tasty ones. So, I whipped up a batch and sealed them up in plastic containers for later (so the refrigerator doesn’t smell like egg sulphur). I used to watch Jacques Pepin on a food channel, and he showed how you can poke a hole in the end of an egg to let the sulphur release, so your eggs don’t have that rotten smell, but I could never get it to work. It just got egg all over the inside of the pan I was cooking them in.

Oh, well. The smell isn’t awful, and it doesn’t mean the eggs are bad, so I’ll live with it. At least I have my deviled eggs.

I’m tired today. And not just from not getting sleep. Yesterday was a very emotional day for me —  much moreso than I expected. I had a neuro appointment, where they did an EMG on my legs to check for neuropathy. They wanted to check how the nerves in my legs and feet are behaving —  if my balance issues might be related to degeneration in my nerves there, or if the impulses are not traveling properly from my spine to brain to legs to feet… and so on.

I had to lie still and relax completely, while they did little electric shocks on my legs, and then tested the nerves in the muscles with little needles that the doctor inserted into the muscle. It wasn’t terrible. I could do without the shocks. It reminded me a lot of when I was a kid running around at dairy farms, bumping into the electric fence. It was like that, but the place where they pressed the electric conductor against my skin was very sensitive. The doctor told me that if I relaxed and got my autonomic nervous system to calm down, I’d have less of a pain response.

I found it interesting that they talked about the ANS that way — and that they seemed to assume that I knew about it and understood what they were talking about. The thing that bothered me about it, was that they went really fast, and I felt like I couldn’t prepare or keep up or get my head around what they were saying, until they’d started. And that sense of no control was stressful. I mean, not necessarily control, but just not feeling like I was actually a part of the process — that they were just doing all this on my body as though I wasn’t even there — I didn’t care for that at all.

It took about 30 minutes to do the testing, and the needles weren’t bad at all. They said it would hurt a little bit, but it didn’t hurt very much at all. The anticipation was much worse. And the needles were actually less painful than the electric shocks. The shocks were the worst, really, now that I think about it. Having your legs jumping around, and feeling that burning roughness from the electric conductor… it was worse than I thought it would be.

I got through it in good spirits, had a pleasant chat with the receptionists, and then headed back to the office where I could just get some work done. It really wasn’t that big of a deal. But then when I was going to sleep, I suddenly burst into tears and wept like a small child. I guess it did bother me — a lot. And the thing that got to me the most was that I was all alone in the process. I’ve stopped discussing the neuro appointments with my spouse — I don’t even tell them that I’m going — because it sets off their anxiety so intensely, to think there might be something “wrong” with me. And then my life gets even more complicated, because they shut down in their anxiety, and they just “drop out” of live, leaving me even more alone — and burdened — than before. So, I stopped telling my spouse about my appointments.

After all, there could be nothing at all wrong with me. Maybe I’m just a very sensitive individual who has a unique combination of traits that make me dizzy at unexpected moments. Who knows? So, why worry my spouse, if that’s the case?

But not having anyone to talk to afterwards, not having anyone to debrief and decompress with… that’s tough. And I really felt it last night.

These times when I have to push through an unpleasant experience is a little like lifting heavier weights on occasion. It forces me to pay attention. It makes me feel vulnerable and out of my element. And it reminds me of how much farther I have to go, to really feel as though my life is on solid footing.

It also makes me more sensitive to the situations of others who are even worse off than I am, who are struggling with serious health issues in the face of a medical system that doesn’t serve them, but only confuses and alienates them… and then blames them for not taking proper care of themselves. That’s especially true for folks with cognitive issues. I had a really hard time, inside the silence of my own skull, keeping up with what was going on around me. So, I just went along with it. But if the doctor had made a bad choice or wanted to do something more serious to me, would I have had the wherewithal to stop them? To question them? To defend myself?

Maybe I could have. Or maybe not. I just don’t know. But I do know that for many, many others, they can’t. They just can’t. They’re at the mercy of the medical system, unable to follow along, unable to figure out what the doctor is saying in the 15 (whopping) minutes they have to spend with them.

And that can be deadly. We can’t speak up for ourselves, we can’t advocate for ourselves. We just end up being guinea pigs, and that’s such a bothersome situation, it alone keeps me up at night, sometimes. I wish to high heaven there were something I could do to change this, but all I can do is offer my own experiences, and hope that somewhere, somehow, someone reads these words and gets something from them.

I’m feeling a little better this morning, but my dream bothers me. It all bothers me. But it’s a new day, a beautiful day, and life is waiting. I’ve got a whole bunch of deviled eggs in the fridge, and that’s pretty cool. Life is good. Regardless.

Onward…

Tracking sleep

fairgroundThe countdown to my business trip is T-minus-4-days. And in the meantime, I’m taking care of my everyday life as best I can.

I’m seeing the neuro nurse practitioner tomorrow, and I’ll be reporting in about my sleep.

Below is a chart of the numbers I’ve collected for every night over the past month. It shows how many hours I’ve slept, as well as how many hours I napped. And it shows how I stack up, relative to my target time of 8.5 hours.

sleep-log-april-2016

I’ve been falling short consistently, apparently. I’ve been thinking I’ve been doing well, but when I see a chart, it’s clear I have a ways to go. A couple of weeks ago, I was really behind on my sleep, due to work stress and a conflict I had with a friend of mine that really got me bent out of shape. I know I shouldn’t let it get to me, but it did.

I am human, after all.

So, this is all stuff to work on. Things to stay mindful of, and not let it all get to me. And to find ways to calm myself down and chill out, rather than getting wound up and bent out of shape. Maybe I’ll put a printout of the chart beside my bed. Yeah – that’s a great idea for a reminder.

I’ve been prepping for my business trip next week, doing some shopping and also some checklists, as well as practicing my talks for the trade show booth. I’m not feeling a huge amount of pressure, though. If I do a good job, then fine. If not, I’m not sweating it. In a way, I don’t really care about the event. I care about the customers I’m going to meet, and I care about the people I work with, but I’m not personally invested in the company. Not anymore. Not since they’re selling out, lining the pockets of the people in charge, while laying off a lot of people.

So, I’m treating it like a free trip to a part of the country I’d never normally go to. Resorts in warm climates are fine, but I hate amusement parks and places where large crowds gather, so yeah, this will likely be the one and only time I ever go to this place.

One good thing is that I’ll get to see a relative I haven’t seen in over 30 years. They’re living in the area, and I’ll get a chance to catch up with them, which will be nice. That will get me off the hook of hanging out with my workmates, who just want to run wild and party while they’re away from their spouses.

I have no interest in joining them. I see them every day, as it is. I’m just going to do my job, and then come home. I wouldn’t even go to the place, if it weren’t for work. I need my sleep (see above). I need to eat right and take care of myself. I can’t get drawn into their version of fun.

So, I’m hoping my relative can provide some welcome respite from their company. It’s a plan, anyway.

In the end, I’m just looking forward to everything being over. Flying there, doing the job, flying home… and getting back to normal again.

But that all feels like a distraction from what my real focus is — getting enough sleep, so I can keep my health in balance… and also not have to use the sleep medication that was prescribed to me. My old neuropsych warned me away from it, because although it supposedly metabolizes quickly, that’s not true for everyone. And I’m so sensitive to meds, as it is, I can’t imagine my body is going to behave like everyone else’s.

The neuro visit this week is really just a way for me to check in — and check out. They don’t seem very interested in addressing the reason I actually went to see them – my balance. So, I’ll handle that myself. And never mind the pills. Or the procedures. They’re not that helpful, anyway.

I think my biggest frustration is that I go to these specialists in good faith, believing that they are willing and able to assist me. And then they just don’t deliver. Or show much interest in delivering. There are a million possible reasons, but figuring it out is not the best use of my time.

I’ve just got to keep the focus on myself, on keeping my own balance in every way possible, and keeping myself fit and capable as best I can. It’s really the only way my life is going to be as great as it can be.

And that’s my intention, really. To just have a great life — and enjoy it to the fullest.

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.

Moving on… and slowing it down

flash-electric
What just happened?

So, I didn’t see the neurologist yesterday. I saw the nurse practitioner (LPN). My MRI looks good – no sign of structural issues on the imaging. So, what I gather is that there’s really nothing the neuro can do for me. I must be one of those “miserable minority” people who just needs coaching to make the necessary changes in their life.

I’ve got no diagnosis from them – just symptoms. And I’m ambivalent about dealing with the LPN. They’re nice enough, but they’re also a bit snarky, making cracks about my employer, who has a bad reputation in the region. And they move too fast. It’s wild – they don’t seem to get that folks with processing speed issues can’t always keep up with them. And they looked at me strangely, when I had questions or needed clarification or when I was writing down my notes. They also didn’t do a very good job of communicating the information clearly to me. It was very scatter-shot, and they didn’t cover everything that had gotten tested. My bloodwork, for instance, never got mentioned. And they were kind of all over the place.

Not this again.

I really think it has to do with the nature of their work. There’s a lot going on, and the neuro is splitting their time between that practice and another practice they’re opening several states away, so the LPN’s workload is probably pretty heavy. It could also be that they’ve got an attitude because they’re “just an LPN” and they don’t get the respect they feel they deserve. It could also be because they’re a “jock” and they have this whole athlete mystique thing going on.

Long story short, they aren’t the most dignified or professional sort, and that’s a little irritating to me.

But that’s fine, because it will keep me away from them. I have the info about my MRI (more or less) and I’m not in any danger. I’ve got this whole headache thing, as well as balance issues, but apparently sleep is the problem — I don’t get enough of it, and that screws everything up.

The other thing I need to work on, is this new neuropsych. They’re really nice, but they talk too fast, and I can’t actually absorb everything they’re saying to me. It’s like a non-stop barrage of ideas and concepts and questions and statements. Good grief. They really need to slow down. I’m a little out of sorts, this morning, after talking to the LPN and the neuropsych yesterday. It was a lot to take in, and I’m still kind of shaking my head, wondering “What just happened?”

Anyway, I’ll focus on my sleep, I’ll work on my balance, and I’ll use my noggin about things. This new neuropsych looks like they’re going to be pretty good. But I don’t need a snarky LPN with an attitude (and possible emotional issues) to confuse me — and gloss over the details I need to cover. I’ll continue to take care of a lot of things myself.

Anyway, it’s a new day, and I’ve got plenty to keep me busy. So, I’ll do that. And work on my sleep.

I got 7 hours last night, which is better than I’ve been doing, lately.

It’s all a process.

Onward.

Making progress – out of the dark

dark-tunnelSo, my new computer is working out great. It’s much faster than my old one, and the display is bigger. It’s got a 16:9 display ratio, which means I can create courses and do videos that will actually play for others. It’s also got a video camera. I tried it out the other day, but I’m not used to seeing myself on the screen, and I look very different on camera than I do in my reflection in the mirror. At least I have it, if I need it. The keyboard action is much nicer than my 10-year-old laptop. I love it when progress happens.

I’m also having a good time digging into some of the tools I can use, now that I have a computer that can handle the workload of modern apps. That extra power and hard drive space just makes everything so much better. And I’m able to experiment and mess around with different ideas, programs, and concepts, so I can expand my skills. I can fiddle around, try new and different things that stretch my brain and thought process, and I can do it all on my own time. There’s a lot of great new stuff happening out there with big data and everything you can do with it, and now I’ve got a place at the table.

That gives me a much greater sense of security in terms of my job prospects. Technology keeps shifting, and I need to keep up with it. So, now I am.

This is a huge development for me. In retrospect, I could have done it sooner. I could have been at this work, at least a few years back. But my brain wasn’t ready. I couldn’t quite piece together all the different steps of getting the new computer, moving things onto it, installing and configuring and what-not.

It was just too much for me, in the same way that cleaning the living room/storage room has been for a number of years. My spouse and I use the living room for a “warehouse” for their business-related supplies. They have a lot of props and tools and accessories they need for their work, and we need somewhere to put them. We have another family room at the other end of the house where we spend most of our time, so the living room has been repurposed for their work, as well as my workout equipment. It’s been increasingly chaotic in there, and neither of us has been able to get our arms around it to sort it all out. Last weekend, I took the bull by the horns and went through 3/4 of the room. The end result was a new storage area in a poorly used corner of the room, with about half the floor space opened up… and a couple of huge boxes of old supplies we don’t need, ready to be sorted (and probably pitched out).

Last weekend was a banner weekend. Saturday I set up the new laptop. Sunday, I cleaned the living room. A good start to the week.

And now I’m gathering up my stuff in advance of seeing the neuro and the neuropsych today. I’ve got my notes and my questions, as well as my MRI CD to look at. I’m a little nervous that the neuro will write me off, because I’m not debilitated enough. I’ve learned to live with a lot of this discomfort and pain and confusion. It’s not necessarily stopping me from living my life. But it is putting a crimp in things… and how much more could I accomplish, if I didn’t have to constantly deal with physical issues — headaches, pain, sensitivities — which increase my confusion and sense of disconnectedness.

The physical issues can be very isolating. They’re a huge drain, and just because I’m more functional than most, doesn’t mean I’m up to snuff relative to my own capabilities. I get that all the time — “Don’t be greedy. You should be happy with what you have – you’re better off than a lot of people.” I don’t dispute that. I am better off than a lot of folks. But compared to where I want to be, compare to where I could be… I have a long ways to go.  And that’s where my focus is. I understand that medical folks need to focus on the people who are in the most dire need, and they see a lot of people who are in rougher shape than I. But my issues are blocking me from just living my life, and I can’t see why I shouldn’t have the best life possible.

Plus, the improvements in my life benefit others. Always. They benefit my spouse, my employer, my friends and family, and strangers I meet and help along the way (who always seem to pop up). Helping me to be the best person I can be, never ever stops at me. It’s not a “time/energy expense” for my medical providers — it’s an investment in the larger world.

It’s a kind of mission of mine — to really serve and assist others. It’s how I was raised. It’s the world I grew up in. Those who have more, must pass along what they have, that others can find the more that they have — and pass it along to others. I’m not talking about providing handouts to everyone, but offering the kind of assistance that others can take and run with, as they see fit, and as they can best do. I’m not doing it for them, I’m not living their lives for anyone else. But I will share what I’ve got, that others might take action as appropriate.

Not everyone is ready, willing, or able to take what I offer and do something with it — and I’m not in the business of just handing out charity left and right, just to go down a black hole of victimized helplessness. But for those who are willing to do something with themselves, I’ll be there for them.

That’s the whole point, from where I stand.

So, I need to make this clear to the neuro when I talk to them today. It’s not that I’m seeking attention or making things up so I can take up their time. I can’t do that whole “miserable minority” thing, where they treat you like a head case who just wants someone to spend time on them. That’s not my thing. I have the potential to be a high-functioning individual in many more ways than I am, right now, and I need to push the envelope to see what more is possible.

Because so much more is. That’s for sure.

Onward.

 

And tomorrow would be a new day…

Happy Spring!
Happy Spring!

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.

Happy spring.

Two down, one more to go

DTI-MRI
DTI MRI – Diffuse Tensor Imaging that shows all the connections in your brain

My watershed week continues. It’s been a full week — I had to get my furnace serviced on Monday, because the pump that circulates the hot water through the registers was broken and overheating, which is why it was shutting down after running for a few minutes at a time.

Wednesday, I had another training to be a tour guide at a local park. We’ve got a few days allocated at work each year to donate to a cause of our choice — I chose some outdoor tour guide work at a place I love, which was also on the list for volunteering. It’s a significant step for me, because I have to study up on the park, its history, and all the wildlife and plant life there, so I can tell people about it. And then I’ll need to train with another seasoned tour guide, to learn the ropes and understand how best to talk with people.

I decided to do this because I need to get out and be more social with people, but I don’t do well in unstructured situations. I don’t always pick up on people’s social clues about when to talk — or when to stop — so it gets awkward. But if it’s in a structured setting, and there’s a time limit and I can follow a sort of “script”, I’m good.

Wednesday was the second of three trainings, and even though the weather was dicey, I still went, and I’m glad I did. It seems as though there are a number of folks exactly like me there — nature nerds who love to learn new things and share them with others.

Yesterday, I had my appointment with the new neurologist, and it went even better than I’d hoped. These folks are really on top of things — and  even better, when we talked about the diagnostics and the imaging I’d had before, they didn’t even bother looking at the MRIs. Because for someone with my history of brain injury, they are not the right kind of MRIs. They told me that DTI is really the only way they can look at the actual connections in my brain — the axonal connections (signs of past shearing), as well as possible micro-bleeds.

I am so excited – it’s taking a monumental effort to resist typing this in all caps.

But I’ll resist, out of courtesy.

This is an incredible relief. Because it signals that these people actually understand what the hell is at the root of my issues. And they also know that a standard-issue MRI is not going to show them what they need to know. I will need to travel to the one facility in the extended area that has the equipment to do the DTI-MRI, but I’m more than willing to do that. Heck, I’d walk there, if need be. I had been hoping that something like this might happen for me. And in fact, I was thinking of getting the imaging done myself, while I still have good insurance, and then hiring a consulting doctor/radiologist to interpret the findings for me. I know of some resources for finding doctors/radiologists online who can interpret test results for you for a pretty low sum. At diagnose.me I paid $50 to have a radiologist from Vienna to take a look at my two prior MRIs and do a comparative analysis and tell me what they saw. So, I could cobble the steps together and use them again, if need be.

But now I don’t have to do that, and I actually have a very experienced neurologist (who specializes in sports) who will look at all the imaging themself and interpret the results for themself. Imagine that. Even though I had to take half a day off work and drive a ways through traffic and bad weather, it was well worth it. I’d do it all over again, in a heartbeat.

This DTI-MRI and the other tests I’ll be taking — for my autonomic nervous system function, as well as an EEG to check out how the electricity is flowing in my brain — might actually be my chance to figure out just what the hell is going on with me, and get past all the psychobabble that abounds. All the best guesses, based on personal observation and interpretation, make me nuts. (That’s the engineer in me talking.) I need hard data, numbers, actual images, to understand things — and so does everyone else. When you rely on human interpretation of signs and symptoms to assess someone’s difficulties, you open yourself up to way too much margin for error.

That’s one of my chief complaints with my neuropsych. Although they mean well, and they have some pretty amazing domain experience, and they have helped me tremendously, their interpretations of what’s going on with me have been an on-and-off source of aggravation. If they weren’t the only person I have regular access to, who is a highly educated professional who can talk at length about things other than politics, Game of Thrones, and Kardashians, I probably would have dropped them some time ago. But when I meet with them, I get to exercise my mind, as well as my brain, so it’s been very useful in that respect. They’re smart enough to know that I’ve done the lion’s share of my recovery, myself, so there’s no illusion about them having a Svengali-like hold on my poor little mind (as some therapists have fancied themselves). At the same time, though, their cultural biases really come through.

They interpret my experience along their own lines — as someone who grew up in a very secular, culturally homogeneous urban area, surrounded by professionals, and living a very entitled life. Whereas, my experience is that of growing up in both a racially mixed, working class urban area, and a deeply religious rural area where the optometrist, dentist, and doctor were the only professionals you ran into on a regular basis — and with them, maybe a handful of times a year. The conceptual gaps between our worlds are long, wide, and deep, but they don’t seem to realize it. And when I’ve tried to raise that as an issue, they flatly denied that it could play a role.

News flash – it does play a role. A huge one.

But that’s going to be changing in a month, because they’re leaving. And today, I’m meeting with their “replacement” — a neuropsych who comes highly recommended. This could be good, because this new NP is not from here. They’re an immigrant from Eastern Europe, and they don’t speak English as a first language. That’s good, because while they are highly educated and they teach at a university in a nearby state, they probably won’t take as much for granted, as my old neuropsych. I’ve lived overseas and also worked a lot with folks from other parts of the world, and I actually find it easier to talk to people who come from a different place and speak a different language.

When you don’t assume that you know, you pay attention more. When you realized that you could be misinterpreting what someone is saying, you listen more closely. It was like that when I was living in Europe, 30 years ago. And that’s how things were when I had to travel to Europe in my old job, 3 years back.

So, that third Big Event is happening today, and I’m pretty stoked about it. I’m also stoked about finding some very cool new reading — and that I actually can read it.

Five years ago, I had no confidence that this would ever be the case. I took what I could get, and I made the best of it. But this turn of events now is just huge for me. It’s like a new chapter is turning over in the book of my life.

And boy, am I ready to let that old one go…

Onward.